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Elizabeth MylesWFH COMMUNICATIONS AND PUBLIC POLICY DIRECTOR

The World Federation of Hemophilia (WFH) is pleased to announce that Alain Weill was elected president at its General Assembly on July 13, 2012. Weill lives in France and has exten-sive professional experience in management and business in an international environment. Now retired, he worked for over 30 years with Air France where he was chief of staff to the chief executive. He has experienced many differ-ent cultures, and has lived in India, the United Kingdom, Belgium, and the Netherlands.

Weill first encountered hemophilia when his son was diagnosed with severe hemophilia A. He has been involved with the Association française des hémophiles (AFH) and was elected as an AFH board member in 2006. He served as an elected member of the Steering Committee of the European Haemophilia Consortium, and was selected by the European Commission to repre-sent patients at EUCERD (European Committee of Experts in Rare Diseases). He was also a mem-ber of the Organizing Committee for the WFH 2012 World Congress in Paris.

“Despite 50 years of efforts, we still face an unsatisfactory situation in many countries in

terms of diagnosis, care, and product availabil-ity,” Weill said. “The work is not yet complete. My objective is that every year brings us closer to our vision of Treatment for All.” ■

AlAin Weill elected president of the World federAtion of hemophiliA

record nUmBers Highlights from the WFH 2012 World Congress.

congress sessionsThe latest advances covered during medical and multidis-ciplinary sessions at Congress.

50 YeArs of AdvAncing treAtment for AllLaunching the WFH Close the Gap campaign and 50th anniversary.

Wfh honoUrs its volUnteersAward winners from the WFH 2012 Awards Ceremony.

Wfh generAl AssemBlYNew NMOs and Executive Committee members.

www.wfh.org

hEmophiliA worldSeptember 2012 Volume 19 • No 2

Right: Alain Weill Below: WFH president Alain Weill, WFH CEO/executive director John E. Bournas, and WFH president (2004-2012) Mark W. Skinner.

WFH 2012 World Congress issue

Craig T. McEwenWFH CONGRESS AND MEETINGS DIRECTOR

The WFH 2012 World Congress brought together the global bleeding disorders community, in record numbers, in Paris, France. This year’s Congress also took on a special meaning with the launch of the 50th anniversary of the World Federation of Hemophilia (WFH) and the start of its Close the Gap campaign. With over 5,400 delegates, from over 130 countries, the session rooms, poster area, and exhibition hall were filled to capacity.

The robust medical program was presented by leading experts in hemophilia research and it included plenary lectures on new approaches to the management of hepatitis C, personalized pro-phylaxis, WFH research initiatives, developing models of hemophilia care, and the use of long-acting products versus gene transfer. The multi-disciplinary program covered topics on family perspectives and support, psychosocial models in hemophilia, ageing with hemophilia, and women with inherited bleeding disorders.

This Congress was organized by the WFH and was hosted by the Association française des hémophiles (AFH). The AFH was honoured to announce that Monsieur François Hollande, president of the French Republic, bestowed his high patronage on the XXX International Congress of the World Federation of Hemophilia.

Congress president Norbert Ferré, honor-ary Congress president Edmond-Luc Henry, WFH president (2004-2012) Mark W. Skinner, medical program co-chair Prof. Claude Négrier,

and Dominique Bertinotti, a representative of the French government and junior minister for families, welcomed the global bleeding disorders community during the Opening Ceremony.

“Holding a World Congress is truly a great honour for the host country,” said Mr. Henry. “The WFH 2012 World Congress also cele-brated the jubilee of the World Federation of Hemophilia, adding to the symbolic force of this Congress for the French Hemophilia Society.”

In honour of the WFH’s 50th anniversary, a number of special guests attended the Congress including Jan Willem André de la Porte, WFH patron; Gina Schnabel, daughter of WFH found-ing president Frank Schnabel; Patsy Carman, wife of Charles Carman, WFH president from

1988-1993; and Brian O’Mahony, WFH president from 1994-2004.

There were many opportunities for Congress delegates to socialize, with an engaging cultural event that was put together by the AFH. In addi-tion, the farewell dinner was a sold-out affair at the Pavillon Dauphine.

The WFH and our local hosts, the AFH, thank the Congress participants for their sup-port—because of it, the WFH 2012 World Congress was a great success. It was a perfect way to mark the beginning of this anniversary celebration and reflect upon the achievements of the global bleeding disorders community. We look forward to the next Congress in Melbourne, Australia, in 2014. ■

Wfh 2012 World congress Welcomes record nUmBer of delegAtes to pAris

Top row: Congress delegates at the WFH resource centre; Taking in the many posters exhibited; Musical entertainment at the Cultural Event. Bottom row: Norbert Ferré, WFH 2012 World Congress president, handing out the daily newspaper; Dancers perform the traditional French can-can dance during the Cultural Event.

WeBcAsts of congress sessionsRegistered Congress participants can now view webcasts of selected sessions from the WFH 2012 World Congress program. In October, national member organizations, hemophilia treatment centre staff, and WFH members will also have access to this webcasting service, which includes full media presentations with animated slides, reproduction of the speaker’s laser pointer movements, and embedded vid-eos. For selected talks, PowerPoint slides are also available for download.

Go to www.wfh.org/congress to access the webcasts of the WFH 2012 World Congress.

Presentations are also available on Apple and Android mobile devices via the TAlKs on the goTM webcast application. Please visit www.talksonthego.com or download the application through the Apple App store or Google Play store.

If you have any difficulties accessing the webcasts, please contact the MULTIWEBCAST support team by email: support@multiwebcast.com.

2 hEmophiliA world • september 2012

mArk W. skinner chAllenges cUrrent models of cAre to meet gloBAl needs

Left: WFH president (2004-2012) Mark W. Skinner. Right: Skinner presenting his plenary in the grand amphitheatre.

Elizabeth MylesWFH COMMUNICATIONS AND PUBLIC POLICY DIRECTOR

Speaking at the opening session of the WFH 2012 World Congress, World Federation of Hemophilia (WFH) president (2004-2012) Mark W. Skinner evaluated current practices and mod-els for treating hemophilia and related bleed-ing disorders, which affect one in 1,000 people worldwide.

“Treatment has come a long way since 1963, when the WFH was founded,” he said. “We are on the cusp of a new revolution in treatment,” with breakthroughs on all fronts over the next few years, ranging from viral-inactivated cryoprecipitate, biosimiliars, longer lasting products, and the real prospect of a cure through gene therapy.

Skinner said that now is the time to rethink current definitions of optimal care and he chal-lenged current thinking on minimum desirable clotting factor levels, which is currently 1 per cent, suggesting that we should incrementally increase levels to 3, 5, and perhaps ultimately 15 times higher to fully prevent bleeding and joint damage from occurring.

“Today, patients and clinicians have been conditioned to accept converting a patient from a severe to a moderate state as the desired end-point of regular replacement therapy.” This standard is based on what was achievable given product supply constraints, economics, and product half-life limitations. “Improving patient quality of life should drive treatment decisions, not economics or supply constraints,” he concluded.

Making optimal treatment affordable was the next hurdle Skinner addressed. He encour-aged manufacturers to adopt a new 21st century business model based on high volume and lower margins. He also challenged government, payers, and manufacturers to “rise to the challenge by improving market accessibility and adopting market-based business solutions to achieve it.”

Skinner noted that challenges in economi-cally less-developed countries are even greater, due to the high cost of products. Using data collected by the WFH over the last 10 years, he showed that patients in poorer countries are far less likely to be diagnosed, treated, or survive into adulthood.

To mark the WFH’s 50th anniversary in 2013, Skinner announced that the WFH will launch a

new decade of the Global Alliance for Program (GAP) Program, to identify 50,000 new patients with bleeding disorders by 2022, with 50 per cent of those in impoverished or underserved countries.

The WFH will also launch a new program, the Cornerstone Initiative, to work in the poorest countries to improve basic aspects of care and lay the cornerstone for the devel-opment of care. This 10-year plan specifi-cally targets those countries and regions of the world that have previously been under-served and where the gap in care is greatest. It will target countries at the lower end of the economic spectrum, laying the basic foun-dation upon which future development can occur. The program will focus on improving diagnostic capacity, providing basic training in the management of bleeding disorders, and strengthening patient organizations.

This plenary took on a special significance for Skinner, as he completed his last term as WFH president during this Congress. ■

to view this plenary as a webcast, please visit www.wfh.org/congress.

3hEmophiliA world • september 2012

Alison Street, MDWFH 2012 WORLD CONGRESS MEDICAL SCIENTIFIC COMMITTEE CO-CHAIR

gene therApY Ted Tuddenham, MD (U.K.), presented data from the first successful clinical trial of gene therapy in hemophilia B, an unprecedented suc-cess in the field of gene transfer that made inter-national headlines late last year. Tuddenham is no stranger to cutting edge science: he was part of the team which sequenced the factor VIII mol-ecule, which led to the cloning of the factor VIII gene and to the highly effective and safe treat-ments available to hemophilia A sufferers today.

neW treAtment prodUctsThe topic of many sessions at this meeting was on new treatment products. In a workshop Flora Peyvandi, MD (Italy), presented data on new, bioengineered drugs that are in phase I, II, and III studies. These novel products show some-times dramatic lengthening in half-life compared with currently licensed recombinant and plasma-derived concentrates and future engineered factor VIII/factor IX molecules will likely have similar results. Measurement of these molecules will present new challenges to industry, regula-tors, and treaters.

This was discussed in greater detail in a laboratory sciences session. The procedure for establishing international standards (IS) for clotting factors has been evolving for the last 50 years, Trevor Barrowcliffe, MD (U.K.), said. These standards are critical for the accurate diagnosis of bleeding disorders, measuring

post-infusion recovery, and potency labelling of treatment products—processes that will be challenged in the near future with the advent of new therapeutic options.

Since the establishment of the first World Health Organization (WHO) IS, plasma-derived and recombinant therapeutic concentrates have been labelled in international units (IU). This approach, which simplifies calculations for replacement dosage and post-infusion recovery, has been notably successful over time, said Anthony Hubbard, MD (U.K.). However, new treatment products, which have been modified to improve manufacturing yield or to prolong plasma half-life, will challenge the traditional approach to potency labelling relative to the WHO IS. Licensing authorities and manufacturers will have to agree on the method used for quantification of coagulant activity in order to maintain a globally harmonious approach. While it should be possible to retain labelling in IU for some products, it may be necessary to label others in arbitrary “product-specific units” based on in vitro biological activity.

prophYlAxisPeter Collins, MD (U.K.), presented evidence that personalized prophylaxis is the recom-mended treatment for people with severe hemo-philia; however, there are clinical and financial challenges associated with this type of treatment. Collins reviewed strategies to tailor prophylaxis regimens to individuals, and showed that lower-dose and more frequent treatments can both reduce product cost and improve the effective-ness of regular replacement therapy.

inhiBitorsJan Astermark, MD (Sweden), addressed the perplexing question of why some hemophilia patients develop inhibitory antibodies. He showed data from the Hemophilia Inhibitor Genetics Study that suggests that it may be possible to genetically identify patients at risk for inhibitor development before they begin treatment. He also looked at new, less expen-sive therapeutic options like low-dose prophyl-axis, and how these can be more effectively implemented.

The CANAL Study—a multicentre, retrospec-tive cohort study—and the prospective PedNet study, found that the average age for developing inhibitors was 15 months, but if adjusted for confounders, age at first product exposure was not a risk factor. The CANAL investigators found that surgery was potentially an important risk factor for inhibitors, and prophylaxis resulted in a 50 per cent reduction in inhibitor formation in patients with severe hemophilia A. However, the RODIN cohort study showed that the cumula-tive incidence of inhibitors did not decrease with increasing use of prophylaxis.

Immune tolerance induction Immune tolerance induction (ITI) can be successful in eliminating inhibitors in the majority of patients, provided it is started soon after the inhibitor develops, said Charles Hay, MD (U.K.).

Historically, the reported success rates of different ITI studies have depended on patient selection and reporting bias. The success rates vary depending on whether patients have insuffi-cient time on ITI, the definition of success, the study end points, and the regimen used during ITI studies. Hay reported that outcome predict-ors of ITI show that a lower starting age results in a better outcome and that ITI interruption sig-nificantly impairs the success rate.

leAding experts from AroUnd the World shAre lAtest scientific reseArch And treAtment strAtegies At congressthe Wfh 2012 World congress continued its strong tradition of sharing knowledge and increasing understanding about inherited bleeding disorders during the many medical and multidisciplinary sessions. here are some highlights from this year’s congress.

“The smaller the gap between the patient’s expectations and their achievements, the higher the quality of life.”

— sylvia von mackensen, md

4 hEmophiliA world • september 2012

Left: Alec Miners, “Economic justifications of prophylaxis,” at the “Models of prophylaxis” session. Right: Paula Bolton-Maggs, MD, speaking at the rare bleeding disorders session.

Treatment of bleeding in patients with inhibitorsMany variables enter into the treatment of acute bleeding in patients with inhibitors. Cost, site, and severity of hemorrhage; inhibitor level; product efficacy and safety; and patient age all must be considered, said Alessandro Gringeri, MD (Italy).

The crucial component in bleeding manage-ment is timeliness. Where we do not achieve an appropriate clinical response, we can continue the same treatment. However, if we do not get a response, we need to increase the dose or consider a different product, reported Gringeri.

Roseline d’Orion, MD (France), said achieving surgical hemostasis in patients with inhibitors is a challenge. Successful hemostasis is achievable with both rFVIIa and FEIBA, in elec-tive and emergency surgeries. Cost of products to cover surgery, which is higher in inhibitor than non-inhibitor patients, and inter-individual vari-ability of efficacy of the different products should be considered. Prolonged treatment to mini-mize the risk of post-operative bleeding is often required, which can be difficult to achieve in countries with significant resource constraints.

oUtcome AssessmentBrian Feldman, MD (Canada), discussed how applying standardized outcome measurement tools as part of routine clinical practice allows clinicians to be more objective when evaluating

how certain therapies work in people with hemo-philia. In turn, this can improve quality of care. Feldman gave examples of specific hemophilia outcome measurement tools that have practical uses in clinical settings.

Musculoskeletal assessment toolsPradeep M. Poonoose, MD (India), and Shyamkumar N. Keshava, MD (India), addressed limitations of some “legacy” outcome assess-ment tools. Poonoose said one must first decide what needs to be measured—structure or func-tion. “Radiological scores without functional status information may cause the researcher to make erroneous assumptions.” Keshava added, “Radiography provides a baseline assessment and can reveal osteochondral changes, but not soft tissue changes. MRI is more complex and best for detail of soft tissue and osteo-cartilage changes, and ultrasonography can be used for assessing soft tissue changes and is relatively inexpensive.”

Health-related QoL“The smaller the gap between the patient’s expec-tations and their achievements, the higher the

quality of life,” said Sylvia von Mackensen, MD (Germany). “Assessment of these gaps can help identify specific healthcare needs,” she said.

Kathelijn Fischer, MD (the Netherlands), told the audience that treatment should be individual-ized to achieve the best outcomes for the patient. “Look at the bleeding pattern of the patient, step up aggressively, and engage in dialogue with the patient and the team,” she said.

Bleeding scoresAlberto Tosetto, MD (Italy), presented an analysis of quantitative bleeding assessment tools (BAT), including the Vicenza BAT, which grades epi-staxis, cutaneous symptoms, minor wounds, oral cavity bleeding, and hemorrhage on a scale of one to three in terms of severity. Data shows BATs can be used for descriptions of bleeding pheno-types, for research purposes, and in diagnosis of von Willebrand disease, Tosetto said. Their use in other bleeding disorders needs to be validated.

hepAtitis c virUs (hcv)Fabien Zoulim, MD (France), a recognized expert in the field of antiviral therapy and drug resistance, discussed the development of non-invasive tools to assess the stage of liver fibrosis stages, as well as a new triple therapy regimen that has been shown to yield significant improve-ments in treating naïve patients with HCV geno-type 1 infection, compared with the existing gold standard of interferon and ribavirin based proto-cols. Updates on ongoing clinical trials, including one in HIV and HCV co-infected patients, were also presented.

“The WFH has a unique opportunity to develop an internationally reputable bleeding disease research program … in collaboration with other international groups that are more experienced in the research arena.”

— David Lillicrap, MD

“look at the bleeding pattern of the patient, step up aggressively, and engage in dialogue with the patient and the team.”

— Kathelijn Fischer, MD

5hEmophiliA world • september 2012

comprehensive cAreThe hemophilia community was a pioneer in developing a comprehensive approach to patient care, and that model is the foundation for the chronic disease management strategy that is widely used in health care today. During the session on developing models of hemo-philia care, the human and financial resources necessary to deliver comprehensive care were described and its central role in the WFH 2012-2014 strategic plan and research program was discussed.

Wfh reseArch progrAmIn his plenary, David Lillicrap, MD (Canada), outlined the WFH’s new research program, which aims to provide infrastructural support for clinical observational and other investigative studies relating to inherited bleeding disorders around the world.

“The WFH has a unique opportunity to develop an internationally reputable bleeding disease research program,” said Lillicrap. “In col-laboration with other international groups that are more experienced in the research arena, for example the International Society on Thrombosis and Haemostasis, the WFH provides the comple-mentary global intelligence to successfully pro-mote knowledge discovery in the field of inher-ited bleeding disorders.”

Top left: Congress delegates take in a session a Congress. Top centre: Carlos Gaitan-Fitch speaking at the “Economics of hemophilia care” session. Top right: Alison Street, MD, “Developing models of hemophilia care”. Left centre: David Lillicrap, MD, during the session “The World Federation of Hemophilia and research”. Left bottom: (L to R): Paul Giangrande, MD, David Page, Brian O’Mahony, and Jan Astermark, MD, during the debate, “Seeing both sides”.

6 hEmophiliA world • september 2012

Women With Bleeding disorders“Women’s bleeding disorders are debilitating, bear high-economic burden, and carry the risk of mortality if untreated,” said Rochelle Winikoff, MD (Canada). She added that developing a mul-tidisciplinary care team assures the patient of quality care.

In setting up a multidisciplinary team, Winikoff outlined five “bullet” points: Identify the patients’ and clinicians’ needs, consider the setting and resources, lay the groundwork by knowing the players and their roles, establish operational procedures, and secure financing.

Ann-Marie Nazzaro (U.S.A.) said women have unique bleeding issues at every stage of life. The Centers for Disease Control and Prevention data shows consistent growth in women regis-tered at hemophilia treatment centres. A recent study shows that 52 per cent of women with a bleeding disorder are now diagnosed by the time they are 12 years old.

rAre Bleeding disorders (rBd)Although there has been progress in the diagnosis and treatment of RBD, much remains to be done.

“It is very important to provide information and education for patients and for doctors so that these disorders can be properly diagnosed and managed,” said Paula Bolton-Maggs, MD (U.K.). “Laboratory diagnosis remains a considerable challenge in many areas of the world, even for von Willebrand disease, which is not a rare dis-order. It is also important to realize that all these disorders affect women as well as men (equally), unlike hemophilia A and B.”

“We need to continue to develop methods of outreach in the countries where these disorders are more common, to increase the

rate of diagnosis, and to work with our industry and other partners to ensure the development and provision of treatment products for these populations.”

economics of hemophiliA cAreNational hemophilia registries do more than aid in diagnosis and treatment. They can also be powerful economic tools in an increasingly cost-conscious, cost-contained healthcare envi-ronment. Angelika Batorova, MD (Slovakia), said data show that low-income countries like Slovakia, Croatia, and Iran that have well-organized national registries also have rates of hemophilia diagnoses and factor VIII use comparable with high-income countries.

Keith Tolley (U.K.) said national registries can collect information on patients’ quality of life, which is a key component of health technol-ogy assessments (HTAs). These assessments help governments and other payers determine the value of treatment and drug therapies by exam-ining their short- and long-term consequences in terms of health and resource use. At this point, cost-effectiveness evidence is limited and inconclusive and national registries should be supported to provide data appropriate for such analysis.

Daniel Arnberg (Sweden) described the first national HTA of hemophilia A care which was conducted in Sweden. This included a study of the use and clinical effectiveness of factor VIII products. Amongst the findings were that pro-phylaxis is effective but that there is insufficient evidence as to the optimal cost and clinically effective dosage regimen. Interestingly, there is no national hemophilia registry in Sweden and the HTA report recommended one be set up to support further analysis ■

there are many webcasts and other educational materials, such as the state of the Art publication and abstracts, available from this congress on www.wfh.org. We would appreciate any feedback and suggestions for the program content for the Wfh 2014 World congress. for more information on how to access the Wfh 2012 World congress webcasts, read more on page two of this issue.

“It is very important to provide information and education for patients and for doctors so that these disorders can be properly diagnosed and managed … Laboratory diagnosis remains a considerable challenge in many areas of the world, even for von Willebrand disease.”

— paula bolton-maggs, md

7hEmophiliA world • september 2012

www.wfh.org/50

8 hEmophiliA world • september 2012

50th AnniversAry HonorAry CoMMiTTee BaxterBayerBiogen idec hemophiliaBiotestBplcsl Behringgreen crossgrifolsinspiration BiopharmaceuticalskedrionlfBnovo nordiskoctapharmapfizersanquin

the Wfh is grateful to our corporate partners for their support of the Wfh 50th anniversary.

Nearly 50 years ago, the World Federation of Hemophilia (WFH) was founded by Frank Schnabel, a Montreal-based businessman born with severe hemophilia A. His vision was to improve treatment and care for “the hundreds of thousands of hemophiliacs” worldwide through a new international organization.

On June 25, 1963, Frank Schnabel convened a global meeting in Copenhagen, Denmark, with representatives from 12 countries, and the rest is history. Today, the WFH represents national patient organizations in 122 countries.

At the WFH 2012 World Congress, we kicked off our anniversary celebrations with the launch of the first in a series of 12 video podcasts. “The Winning Coalition,” produced and directed by Marilyn Ness, tells the story of

building sustainable care in Senegal, and how doctors, patient leaders, governments, volun-teers, and the WFH work together to improve care. This video is available on YouTube and the WFH website, and others will be released throughout 2012 and 2013.

Haemophilia, the official journal of the WFH, is publishing a series of commemorative articles to mark the WFH’s 50th anniversary, one per issue, throughout 2012 and 2013. These arti-cles capture key moments in hemophilia care, such as Margareta Blomback’s recollections on her research into von Willebrand disease, Ulla Hedner’s story on the development of activated factor VII, and others.

50th anniversary materials are available at www.wfh.org/50.

hoW YoU cAn get involved With oUr 50th AnniversArY:

m Share your stories, photographs, and memorabilia with the WFH

m Show podcast videos to your members or share links on your website

m Celebrate your organization’s history and its history with the WFH

m Participate in World Hemophilia Day 2013, dedicated to the WFH 50th anniversary

m Sign up at www.wfh.org to receive the latest updates on the 50th anniversary activities

Wfh lAUnches 50th AnniversArY And the close the gAp cAmpAign50 years of advancing treatment for all

50

YeArs of AdvAncing TreATMenT For All

www.wfh.org/50

The Patron’s Challenge: All donATions Will be TriPledJan Willem André de la Porte announced a remarkable challenge to the entire bleeding disorders community—that every dollar donated to the campaign, beginning at Congress, will be matched 2:1. “I am pledging half a million dollars—but alone it is not enough. We must all help. I hope that my personal pledge will inspire our community to give generously so that together we can close the gap in care and achieve our vision of Treatment for All.”

Contributions to the WFH Close the gap campaign can be made online at www.wfh.org/closethegap.

Left: Jan Willem André de la Porte launches the Patron’s Challenge.

closing the gAp Since its founding in 1963, the WFH has made remarkable progress in improving care for peo-ple with bleeding disorders. Yet there are still vast unmet needs. 75 per cent of people with a bleeding disorder still do not receive adequate care or any care at all. In many of the poorest regions of the world, people remain undiag-nosed and untreated; millions of men, women and children continue to suffer needlessly.

To address these needs, the WFH has launched a three-year campaign to close the gap in care. Campaign co-chair Mark W. Skinner launched the $5 million Close the Gap campaign at the WFH 2012 World Congress Opening Ceremony. The Close the Gap campaign will fund WFH programs that build upon past suc-cesses, including the second decade of the Global Alliance for Progress (GAP) Program as well as the new Cornerstone Initiative that will reach out to areas that have been previously under-served and that currently lack the healthcare standards or infrastructure to fully benefit from WFH programs like GAP. This new initiative will lay the foundation of basic care so that future advances can eventually take root.

Core WFH stakeholders have shown tre-mendous dedication to the campaign. 100

per cent of the WFH volunteer leadership has made a pledge to the campaign and all 12 NMOs, whose countries were represented at the WFH’s founding in 1963, have made a pledge. All seven GAP sponsors have made multi-year commitments and an additional GAP sponsor has joined in this partnership. Speaking at the launch, Skinner appealed to the WFH 2012 World Congress Opening Ceremony audience and to the bleeding disor-der community at large: “We need your help to close the gap, to raise the last million.” WFH patron, Jan Willem André de la Porte, spoke of his personal experience with hemophilia and announced a personal pledge to inspire oth-ers to give.

“As a person with hemophilia born at a time when there was little known about the disease, I have lived through the pain and fear of the unknown,” says André de la Porte. “But now I know that pain is not inevitable. There is hope. With the right foundation of basic care, sustainable development is achievable.”

In closing, Skinner appealed to the com-munity: “No gift is too small—or too large. Each dollar counts. Please join us. Be part of the vision. Together we will close the gap.” ■

50th Anniversary Honorary Committee

9hEmophiliA world • september 2012

Close THe gAP CAMPAign CoMMiTTee

Co-CHAirs

mark W. skinner, Wfh president (2004-2012)Jan Willem André de la porte, Wfh patron

HonorAry CAMPAign CoMMiTTee MeMbers rePresenTing WFH PAsT PresidenTs:

Frank Schnabel, Wfh president (1963-1987)

frank schnabel, iiigina schnabelmarie-france vandamme

Charles Carman, Wfh president (1988-1993)

patsy carman

Brian o’mahony, Wfh president (1994-2004)

WFH Ceo John e. Bournas

viCe–PresidenT FinAnCe eric e. stolte

You can make a difference.www.wfh.org/closethegap

75% oF PeoPle WiTH A bleeding disorder do noT reCeive AdequATe CAre oF Any CAre AT All

WhAt Will it tAke toClose THe gAP?

exceptionAl volUnteers recognized dUring Wfh AWArds ceremonYSarah FordWFH COMMUNICATIONS MANAGER

The World Federation of Hemophilia (WFH) recognized outstanding volunteers from around the world in the WFH Awards Ceremony held during the WFH 2012 World Congress.

The Inga Marie Nilsson Award, sponsored by Octapharma, is given to an individual who has contributed substantially with leadership and initiative through a project which advances the WFH mission. Alok srivastava, Md (India), was given this award based on his many contribu-tions to the bleeding disorders community and the WFH, including the revision of the WFH’s Guidelines for the Management of Hemophilia. This is the second time that he has received this award.

Piet de Kleijn (the Netherlands) was the winner of the Pietrogrande Prize. This prize rec-ognizes a healthcare professional who has nota-bly contributed to furthering the mission and goals of the WFH Musculoskeletal Committee. Horacio Caviglia, Md (Argentina), was awarded the Henri Horoszowski Award, selected by the Musculoskeletal Committee, for his paper entitled “Pseudotumor surgery in haemophilia A patients: Comparative results between inhibitor and non-inhibitor patients.”

The Henri Chaigneau Prize of the Association française de hémophiles was awarded to edward g. Tuddenham, Md (U.K.), for his clinical research in the fields of fac-tor VIII gene cloning, factor VIII gene mutations, factor IX gene therapy, and multiple other aspects of hemostasis and their pathologies.

The Twins of the Year Awards are given annually, by the WFH, to recognize the most

exceptional organization and treatment cen-tre twinning partnerships. This program, spon-sored by Pfizer, pairs hemophilia organizations or medical centres, in developing and developed countries, to encourage the transfer of skills, resources, and information.

There were two sets of Treatment Centre Twins of the Year for 2010: The Hemophilia society delhi Chapter (India) and The Manitoba Pediatric bleeding disorders Program (Canada); and The university of yaoundé (Cameroon) and the university of geneva (Switzerland). The 2010 Organization Twins of the Year Award went to the Tunisian Hemophilia Association and the quebec Chapter of the Canadian Hemophilia society.

The Treatment Centre Twins for 2011 award recipients were the estella Pediatric Hematooncology Center Manado (Indonesia) and the van Creveldkliniek, university Medical Center utrecht (the Netherlands). The 2011 Organization Twins Award went to the Cambodia Haemophilia Association and the Haemophilia Foundation of new Zealand.

The Susan Skinner Memorial Fund Scholarship for 2011 was awarded to Alexandra Johnson (U.S.A.) and Aleksandra ilijin (Serbia) for 2012. The scholarship was established as an endowment to support the training and education of young women with bleeding disor-ders or who are carriers, who demonstrate out-standing leadership potential to become leaders in their country and future leaders in the bleed-ing disorders community.

Several new awards were inaugurated at this Congress Awards Ceremony. The Advocacy

Recognition Award, launched in 2010 as part of the Advocacy in Action program, which is funded by Baxter, aims to highlight a successful advocacy campaign by one WFH national mem-ber organization. This year’s recipient was the Federación de Hemofilia de la república Mexicana for their advocacy campaign to secure free treatment and care for uninsured children, under the age of 10, who have hemophilia and VWD.

The Young Researchers Award, given to researchers under 35 who have submitted highly rated abstracts to Congress, was awarded to benjamin bluth (U.S.A); Corien eckhardt, samantha gouw, and Perrine limerg (the Netherlands); and James Porter (U.K.).

The Christine Lee Haemophilia Journal Award was also inducted this year. This award will be given out annually, starting in 2013, and will be presented to a young researcher in recog-nition of the best article published in the official journal of the WFH in a calendar year. It is spon-sored by Wiley-Blackwell and will include a prize of US$3,000.

Christine lee, Md (U.K.), founder of the Haemophilia Journal, was awarded the WFH’s Lifetime Achievement Award, only the second recipient of this award since it was created in 2006. Lee was consultant and director of the Royal Free Haemophilia Centre and Haemostatis Unit from 1987 until her retirement in 2005. Lee is also the founding editor of the journal Haemophilia, which was luanched in 1995. She is emeritus professor of haemophilia, University of London, and has published more than 300 peer-reviewed scientific papers about hemophilia and edited eight books including the Textbook of Hemophilia.

Left to right: Celebrating the winners during WFH 2012 Awards Ceremony.; Gina Schnabel and Mark W. Skinner present the International Frank Schnabel Award to Martha Patricia Monteros Rincón (centre); Alison Street, MD, presents Christine Lee, MD, with the WFH Lifetime Achievement Award.

hEmophiliA world • september 201210

The International Healthcare Volunteer Award was given to Piet de Kleijn (the Netherlands). de Kleijn has been a dedicated member of the hemophilia family for many years. Since 1979, he has practiced and researched physical therapy in hospitals in the Netherlands and has been a committed WFH volunteer, a member of the Musculoskeletal Committee, and conducted WFH workshops in many countries.

Martha Patricia Monteros rincón (Mexico) won the International Frank Schnabel Volunteer Award. Over the last two decades, Monteros has helped improve access to care and treatment for the bleeding disorders commu-nity in Mexico. She has advocated for insured care for children with bleeding disorders in her country, and has promoted care and treatment for all patients in the country. It was especially meaningful that Gina Schnabel, Frank Schnabel’s daughter, was one of the presenters of this award.

The WFH Awards Ceremony closed with a touching tribute to WFH president (2004-2012) Mark W. skinner, given by Bruce Evatt, MD, WFH Lifetime Achievement Award recipient in 2006. Evatt thanked Skinner, on behalf of the global bleeding disorders community, for his dedi-cation and commitment to the WFH and spoke memorably of Skinner’s concern for patients in developing countries and the passionate response that has driven his tenure over the last eight years. A special book was presented to Skinner which included photos and messages from the individu-als that he has met and worked with during his time with the WFH. Skinner received a standing ovation from the audience.

The WFH wishes to congratulate all the 2012 award recipients. A special thanks goes to Aris Hashim, chair of the WFH Awards Committee, for hosting this ceremony. For photographs and more information, please visit www.wfh.org ■

helping to close the gAp At congress 2012Antonietta ColavitaWFH ANNUAL CAMPAIGN MANAGER

The World Federation of Hemophilia (WFH) would like to extend a tremendous thank you to the more than 200 delegates who helped launch our Close the Gap campaign at the WFH 2012 World Congress in Paris.

During Congress, close to US$40,000 was raised to help close the gap in care world-wide, with gifts ranging from 20 centimes to US$5,000.

We would like to extend a special thank you to WFH patron Jan Willem André de la Porte for his remarkable generosity and inspiring challenge. André de la Porte has matched 2:1 every dollar donated at Congress. Every contri-bution has been tripled and the total raised at the WFH 2012 World Congress is an outstand-ing US$120,000!

Join us on Facebook to see photos of Congress delegates making their mark on the WFH World map.

Donations can continue to be made at any time online at www.wfh.org and will still be eligible to be matched by our patron. Your gift will be tripled.

congratulations to campaign winners at congress:

m Daily draw prizes were won by Julie Heinrich (U.S.A.), Debbi Adamkin (U.S.A.) and Woet L. Gianotten (the Netherlands).

m Uroš Brezavšček (Slovenia) won the grand prize of return travel, accommodation, and registration for the WFH 2014 World Congress in Melbourne, Australia.

m The WFH World Cup was awarded to Panama as the country with the biggest heart (the most donors at Congress, relative to population size). Second place was Canada (which won in 2010), and third was Bahrain.

Thank you to the Association francaise des hémophiles and the Haemophilia Foundation Australia who donated the draw prizes.

Over 60 delegates joined up or renewed their membership at Congress. To mark the 50th anniversary of the WFH, these members will receive 50 per cent more on their member-ship cycle—18 months of membership for the price of 12. In addition, five names were drawn from among these to receive a compli-mentary subscription to Haemophilia, the offi-cial journal of the WFH. Congratulations to Claudia S. Lorenzato (Brazil); Shubhranshu S. Mohanty (India); Esther Muntu (Indonesia); Pamela Narayan (India); and David Stephensen (U.K.). The WFH would like to thank Wiley-Blackwell for providing these five compliment-ary subscriptions.

Sign up for WFH membership and find out more about benefits at www.wfh.org.

We are deeply grateful to everyone who helped make the WFH 2012 World Congress the most successful to date. Together we will close the gap.

Jan Willem André de la Porte doing the daily draw at the WFH resource centre.

Congress delegates marking their place on the WFH map.

11hEmophiliA world • september 2012

Wfh YoUth delegAtes hAve A strong voice At gloBAl nmo trAiningAnabella ZavagnoWFH PROGRAM COORDINATOR, TWINNING & GLOBAL NMO TRAINING

Over 100 participants from 85 countries attended the WFH Global Training for National Member Organizations, held in Marne-la-Vallée, France, from July 5-7. There were many new faces at the training, including 15 youth delegates funded by WFH fellowships and 2 recipients of the Susan Skinner Memorial Fund scholarships.

At a time when many associations are having difficulty engaging youth, it was inspiring to see the enthusiasm and involvement of these young leaders. “These young people are ready to take on a greater role in their own societies,” said facili-tator and WFH Executive Committee member Deon York (New Zealand).

The training sessions aimed to help patient leaders expand their skills and knowledge through a mix of workshops and pres-entations on such topics as clinical research, fundrais-ing, youth involvement, organizational assessment, conflict management, and advocacy skills.

A screening was held of the film Bad Blood: A Cautionary Tale, which chronicles the HIV pandemic in the US hemophilia community. Following the film, director and producer Marilyn Ness, WFH president (2004-2012) Mark W. Skinner, National Hemophilia Foundation CEO Val

Bias, and Polish Hemophilia Society board member Radoslaw Kaczmarek led a discussion on the value of the film as a tool to raise aware-ness and advocate for patient involvement when decisions are being made about their treatment and care. ■

revised WFH GuidelineS For tHe ManaGeMent oF HeMopHilia pUBlished in HaeMopHiliaJennifer LalibertéWFH EDUCATIONAL MATERIALS MANAGER

Hemophilia is a rare disorder that is com-plex to diagnose and manage. By compil-ing the second edition of its Guidelines for the Management of Hemophilia, the World Federation of Hemophilia (WFH) aims to pro-vide practical, evidence-based guidance to healthcare providers, government authorities, and patient organizations seeking to initiate and/or maintain hemophilia care programs. We also hope they will encourage practice har-monization around the world and, where rec-ommendations lack adequate evidence, stimu-late appropriate studies.

The first edition of Guidelines for the Management of Hemophilia, published in 2005 by the WFH, proved useful for those looking for basic information on the comprehensive manage-ment of hemophilia. The need for revision arose for several reasons, the most significant of which was the need to support practice recommenda-tions with the best existing evidence. There are recent high-quality data from randomized con-

trolled trials establishing the efficacy and superi-ority of prophylactic factor replacement over epi-sodic treatment, for example. There is also greater recognition of the need for better assessment of outcomes of hemophilia care using newly devel-oped, validated, and disease-specific clinimetric instruments. This revised version addresses these issues and includes necessary updates to all other sections.

The issue of universal applicability, given the diversity of health services and economic systems around the world, deserved careful consideration. Our strongly held view is that the principles of management of hemophilia are the same all over the world. The differences are mainly in the doses of clotting factor concentrates (CFC) used to treat or prevent bleeding, given that the costs of replacement products comprise the major expense of hemophilia care programs. Recognizing this reality, these guidelines continue to include a dual set of dose recommendations for CFC replacement therapy, which are based on published literature and practices in major centres around the world. However, the lower

doses recommended may not achieve the best results possible and should serve as the starting point for care to be initiated in resource-limited situations, with the aim of gradually moving toward more optimal doses, based on data and greater availability. ■

The WFH would like to thank Alok Srivastava, MD, and the expert working group for their hard work and dedication to this project. The revised guidelines are now available in the journal Haemophilia and at www.wfh.org.

GUIDELINES

Guidelines for the management of hemophiliaA. SRIVASTAVA,* A. K. BREWER,† E. P. MAUSER-BUNSCHOTEN,‡ N. S. KEY,§ S. KITCHEN,¶

A. LLINAS,** C. A. LUDLAM,†† J . N. MAHLANGU,‡‡ K. MULDER,§§ M. C. POON¶¶ andA. STREET***; TREATMENT GUIDELINES WORKING GROUP ON BEHALF OF THE WORLD

FEDERATION OF HEMOPHILIA*Department of Hematology, Christian Medical College, Vellore, India; †Department of Oral Surgery, The Royal Infirmary,

Glasgow, Scotland; ‡Van Creveldkliniek and Department of Hematology, University Medical Center Utrecht, Utrecht, The

Netherlands; §Department of Medicine, University of North Carolina, Chapel Hill, NC USA; ¶Sheffield Haemophilia and

Thrombosis Centre, Royal Hallamshire Hospital, Sheffield, UK; **Department of Orthopaedics and Traumatology, Fundacion

Santa Fe University Hospital Fundacion Cosme y Damian and Universidad de los Andes and Universidad del Rosario, Bogota,

Colombia; ††Comprehensive Care Haemophilia and Thrombosis Centre, Royal Infirmary, Edinburgh, UK; ‡‡Haemophilia

Comprehensive Care Centre, Johannesburg Hospital and Department of Molecular Medicine and Haematology, Faculty of

Health Sciences, National Health Laboratory Services and University of the Witwatersrand, Johannesburg, South Africa;

§§Bleeding Disorders Clinic, Health Sciences Center, Winnipeg, Canada; ¶¶Departments of Medicine, Pediatrics and

Oncology, and Southern Alberta Rare Blood and Bleeding Disorders Comprehensive Care Program, University of Calgary,

Foothills Hospital and Calgary Health Region, Calgary, Canada; and ***Haematology, Alfred Hospital, Melbourne, Victoria

Australia

Summary. Hemophilia is a rare disorder that iscomplex to diagnose and to manage. These evidence-based guidelines offer practical recommendations onthe diagnosis and general management of hemophilia,as well as the management of complications includingmusculoskeletal issues, inhibitors, and transfusion-transmitted infections. By compiling these guidelines,the World Federation of Hemophilia aims to assist

healthcare providers seeking to initiate and/ormaintain hemophilia care programs, encouragepractice harmonization around the world and, whererecommendations lack adequate evidence, stimulateappropriate studies.

Keywords: bleeding disorders, guidelines, hemophilia,management, treatment

Correspondence: Dr. Alok Srivastava, Christian Medical College,Vellore 632004, India.Tel.: +91 416 228 2472; fax: +91 416 222 6449;e-mail: aloks@cmcvellore.ac.inAccepted after revision 6 June 2012

© 2012 Blackwell Publishing Ltd

1

Haemophilia (2012), 1–47

DOI: 10.1111/j.1365-2516.2012.02909.x

David Silva Gomez (left) facilitating a discussion during the Global NMO Training.

12 hEmophiliA world • september 2012

neW president, neW memBer orgAnizAtions, And neW congress sites decided At generAl AssemBlYSarah FordWFH COMMUNICATIONS MANAGER

At the 31st General Assembly, held on July 13, the World Federation of Hemophilia (WFH) wel-comed five new member organizations, bringing the total number of countries represented to 122. National patient organizations from Afghanistan, Mauritius, Montenegro, Uganda, and the United Arab Emirates were voted in as associate national member organizations. In addition, associate member organizations from Cameroon, Kyrgystan, Oman, and Qatar became full national member organizations (NMOs).

Alain Weill (France) was elected WFH president during the General Assembly. Read more about Weill on page one of this issue. Other Executive Committee members that were elected include Alok Srivastava, MD (India), as vice-president medical; Eric Stolte (Canada), vice-president finance; Magdy El Ekiaby, MD (Egypt), and Alessandro Gringeri, MD (Italy), as medical members; and David Silva (Spain) and Pam Wilton (Canada) as lay members. Following the General Assembly, Margareth Castro Ozelo, MD (Brazil), was appointed by the Executive Committee to complete a two-year medical term left vacant by Srivastava’s election as vice-presi-dent medical. In addition, Carlos Safadi Márquez (Argentina) was co-opted onto the WFH Executive Committee.

Congress sites for both 2016 and 2018 were also voted on by WFH NMOs. The National Hemophilia Foundation (NHF) successfully bid to host the WFH 2016 World Congress in Miami, Florida. The UK Haemophilia Society won the bid to hold the WFH 2018 World Congress in Glasgow, Scotland. By selecting the WFH 2018 World Congress site this year, the WFH will be able to announce dates sooner and avoid potential con-flicts with other meetings.

neW strAtegic directionsExecutive Committee members and staff presented new strategic initiatives to the General Assembly. WFH CEO/executive director John E. Bournas provided an overview of the new strategic plan, which builds on the past successes and strengths of the organization. Alison Street, MD, WFH vice-president medical (2008-2012) outlined the WFH’s focus on outcomes-based research and the new WFH research program. The objectives of the program include establishing efficient data collec-tion within hemophilia treatment centres to track and report patient health outcomes, as well as to conduct basic observational studies on bleeding disorders and expand the global capacity to con-duct research.

Mark W. Skinner, WFH president (2004-2012) also outlined new WFH initiatives to improve care in developing countries. This includes launching the next decade of the Global Alliance for Progress (GAP) Program and a new initiative, the Cornerstone Initiative, targeting underserved and impoverished regions of the world to help develop basic care in the area of diagnosis and management of bleeding disor-ders, and to strengthen patient organizations.

thAnk YoU to oUtgoing execUtive memBersAt this General Assembly, a number of Executive Committee members completed their terms. On behalf of the global bleeding disorders community, we would like to thank them for their service to the WFH.

mark W. skinner, WFH presidentAlison street, md, WFH vice-president medicalrob christie, WFH vice-president financepaula Bolton maggs, md, medical memberJohnny mahlangu, md, medical member

Thank you for your commitment, leadership, and inspiration. ■

WFH exeCuTive CoMMiTTee 2012-2014

PresidenTAlain Weill

viCe-PresidenT MediCAlAlok srivastava, md

viCe-PresidenT FinAnCeeric e. stolte

viCe-PresidenT ProgrAMsnigel s. key, md

viCe-PresidenT nMoAris hashim

viCe-PresidenT CoMMuniCATions And

PubliC PoliCymagdy el ekiaby, md

exeCuTive CoMMiTTeemargareth castro ozelo, md

Alessandro gringeri, mdcarlos safadi márquez

thomas sanniédavid silva gomez

pamela Wiltondeon York

Ceo/exeCuTive direCTorJohn e. Bournas

Left: The United Arab Emirates is welcomed as a WFH associate national member organization. Right: NMOs voting during the 2012 General Assembly.

13hEmophiliA world • september 2012

The local volunteers outside the Palais des Congrès.

The AFH at their booth in the exhibition hall.

Nurses and staff in the Treatment Room.

dedicAted volUnteers And donAted clotting fActor concentrAtes proved essentiAl to congress pArticipAnts in need

Maria Carolina ArangoPROGRAM OFFICER—HUMANITARIAN AID & ACCREDITATION

The World Federation of Hemophilia (WFH) partnered with the Association française des hémophiles (AFH) to ensure all people with bleeding disorders had treatment readily available throughout the Global NMO Training, the WFH 2012 World Congress, and the WFH General Assembly.

A total of 681,000 international units (IU) of clot-ting factor concentrates were kindly donated by Baxter, Bayer Healthcare, CSL Behring, LFB, Novo Nordisk, Octapharma, and Pfizer for use in the treatment rooms during these events.

A team of dedicated volunteer doctors, nurses, and physiotherapists played a vital role in ensuring that the planning and operation of the treatment room was suc-cessful. Patients who visited the treatment room where first greeted and examined by a doctor who would pre-scribe treatment and refer them to the integrated physio-therapy room on an as-needed basis. Wheelchairs were also made available to patients to ensure a more accessible Congress experience.

The WFH would like to thank our donors for their continued commitment to making the treatment room possible and express our profound appreciation to the AFH and the exceptional team of medical professionals for the remarkable service they provided. ■

thAnk YoU — merci Michelle GradyWFH COMMUNICATIONS OFFICER

The WFH 2012 World Congress would not have been possible without the hard work and determination of the Congress host, the Association française des hémophiles (AFH) and a dedicated group of local volunteers.

Special recognition needs to be given to the Congress host, the AFH, for their time, effort, and devotion in helping to ensure the undeniable success of the Congress. Made up almost entirely of volunteers, the AFH is one of the original founding mem-bers of the World Federation of Hemophilia (WFH) and a member of the European Haemophilia Consortium.

“It has been a great honour for the AFH to host such an important scientific meet-ing,” said Norbert Ferré, Congress president and president of the AFH. “Not only does it testify to the commitment of all the volunteers within the organization, it also recog-nizes the expertise of the AFH as well as the French scientific community and health authorities who support us.”

Nearly 70 volunteers were recruited and trained by the AFH, under the direction and management of Michel Du Laurent de la Barre. Volunteers prepared delegate bags, helped answer delegates’ questions regarding WFH events at Congress, distributed the newspaper Hemophilia Daily, and greeted Congress delegates each day with both enthu-siasm and kindness.

The WFH is also grateful to Congress sponsors. For a full list of these sponsors, go to page 16. As we close the books on our most successful Congress to date, the WFH would like to extend a heartfelt thank you to all who gave their time and dedication—it would have been impossible without them. ■

14 hEmophiliA world • september 2012

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Wfh 2012 World congress sponsorsWfh 2012 gloBAl sponsorsBaxterBayer HealthCare CSL Behring

Wfh 2012 World congress plAtinUm sponsorsBaxterBayer HealthCareBiogen Idec Hemophilia /SOBICSL BehringLFBNovo NordiskOctapharmaPfizer

Wfh 2012 World congress gold sponsorsGrifolsInspiration Biopharmaceuticals

Wfh 2012 World congress sUpportersBiotest AGGreen CrossKedrion

hemophiliA World WOULD LIKE TO HEAR FROM YOU!The activities of people living with hemophilia and other inherited bleeding disorders, and their organizations, are important to everyone in the global bleeding disorders community. We welcome stories, letters, and suggestions for articles. Please send them to:

The Editor, Hemophilia WorldFédération mondiale de l’hémophilie1425, boul. René-Lévesque Ouest, bureau 1010Montréal, QuébecH3G 1T7, CanadaE-mail: sford@wfh.org

PresidentAlain WeillEditorial CommitteeAntonio AlmeidaMarion Berthon-ElberJohn E. BournasCheryl D’AmbrosioMasood FareedSarah FordMichelle GradyShelley MattsonCraig T. McEwenElizabeth MylesDolly Shinhat-RossDavid SilvaAlok SrivastavaEric StolteAlison StreetAlain WeillEditorSarah FordEditorial AssistantMichelle GradyContributorsMaria Carolina ArangoAntonietta ColavitaSarah FordKhalil GuliwalaMichelle GradyAshwin KaushalJennifer LalibertéCraig T. McEwenElizabeth MylesDolly Shinhat-RossAlison StreetAnabella ZavagnoGraphic DesignEm Dash DesignPrint ProductionAS LithographeHemophilia World is published three times a year by the World Federation of Hemophilia (WFH).Opinions expressed in Hemophilia World do not necessarily reflect those of the WFH. Permission to translate and/or reprint all contents of Hemophilia World is granted to interested hemophilia organizations, with appropriate acknowledgement of the WFH.Esta publicación esta disponible en español. Traducido al español por Rosi Dueñas – McCormick & Assoc.Cette publication est disponible en français.Hemophilia World is available as a PDF file at www.wfh.orgContact us:1425, boul. René-Lévesque Ouest Bureau 1010Montréal, QuébecH3G 1T7, CanadaTel: +1 (514) 875-7944Fax: +1 (514) 875-8916E-mail: wfh@wfh.orgWebsite: www.wfh.org

cAlendAr of events 2012ATHN Data Summit 2012September 20–21, 2012 —Chicago, U.S.A.The American Thrombosis and Hemostatis Network (ATHN)Tel.: +1–800–360–2846Email: info@athn.org

Association pour la Thrombose et l’Hémostase Pédiatriques (15ème Séminaire)October 17, 2012 —Amiens, FranceTel.: 03.22.66.89.50Email: pautard.brigitte@ chu-amiens.fr

EHC Conference 2012October 26–28, 2012 —Prague, Czech RepublicEuropean Haemophilia ConsortiumEmail:  info@conferenceorganisers.iewww.ehc2012.eu

HAA–APSTH 2012October 29–31, 2012 —Melbourne, AustraliaHaematology Society of Australia (HAA)Tel.: +61 8 8363 1307 Email: haa@fcconventions.com.au www.fcconventions.com.au/HAA2012/

NHF 64th Annual MeetingNovember 8–10, 2012 —Orlando, U.S.A.National Hemophilia Foundation www.hemophilia.org

World AIDS DayDecember 1, 2012National AIDS Trust www.worldaidsday.org

ASH Annual MeetingDecember 8–11, 2012 —Atlanta, U.S.A.American Society of Hematology Tel.: +202–776–0544 Email: ashregistration@jspargo.com www.hematology.org