Rare Disease Day Awareness Campaign 2012

Paloma TejadaSenior Communications Manager

CNA Meeting, Paris November 8, 2011

www.eurordis.org

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What is Rare Disease Day?

The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and the millions of people living with them

Coordinated by EURORDIS at the international level and National Alliances at the country level.

The political momentum resulting from the Day has also served for advocacy purposes. It has notably contributed to the advancement of national plans and policies for rare diseases in a number of countries.

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Past, present and future!

• Launched by EURORDIS and the CNA in 2008• + 1000 events across the world reaching hundreds of

thousands of people and resulting in a great deal of media coverage

• Started as a European event• Progressively become a world event • US joining in 2009 • 56 countries in 2011• We hope even more will join in 2012!• Our objective is for the WHO to recognise the last day of

February as the official Rare Disease Day

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Targets

� For patients and by patients

� General Public (and the Media)

� EU and national policy makers & Health

authorities

� Health professionals and care givers

� Researchers, clinicians and academics

� Pharmaceutical and biotech industry

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Past campaigns

- 2008 : RD as a Public Health Priority “A rare day for special people”18 countries

- 2009 : Patient-centered care “Patient Care: A Public Affair!”30 countries

- 2010: Bridging Patients and Research“Patients & Researchers: Partners for Life!”46 countries

- 2011: Rare Diseases & Health Inequalities“Rare but Equal”56 countries

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Rare Disease Day 2012

• Leap year: 29th of February ���� a rare day for rare diseases!

• RDD ���� 5th edition

• Theme ���� Solidarity

• Slogan ���� “Rare but Stronger Together”

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2012 Theme: SOLIDARITY

To focus on the importance and the need for collaboration and mutual support in the field of rare diseasesSolidarity is particularly present in the RD commu nity:

� Solidarity between patients

� Solidarity between HCPs / carers and patients

� Solidarity between patients and RD stakeholders

� Solidarity between countries

� Solidarity between Rare Diseases

We aim at extending this sense of Solidarity toward s RD patients to the society at large!

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2012 Theme: SOLIDARITY

Acting together makes particular sense in the field of RD because patients are rare, expertise is scarce and PLWRD face similar challenges.

+ RD is an area where international collaboration is essential

Therefore:

“Rare but Strong Together”

56 countries in RDD 2011 –a true sign of world sol idarity

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Communication tools – logo and banner

Can be used as an email signature!

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Communication tools - Poster

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The photo

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Emilia, Tadas and Maria, MPS VI, Lithuania

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Information Pack

Feel free to adapt, translate and sharewith your members and contacts to helpthem organise their own awareness raising acitivites!

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On line Resources

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www.rarediseaseday.org• Launched last Friday Nov 4!

• Country pages + European page• «Friends of Rare Disease Day»• Newsfeed (Meltwater)• Social media:

� Facebook: 18 000 fans� Twitter: 2 125 followers

• « Tell your Story » � Photos on RDD Flickr gallery� Videos on RDD Youtube channel

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Communication tools – Website

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Friends of Rare Disease Day

• 300 joined in 2011

• Created to give visibility to those wanting to part icipate – not National Alliance or Country organiser

• Can be researchers, health professionals, care give rs, public authorities, industry, individual patients, patient groups and any other person or entity genuinely interested

• The website will show a growing list of “Friends” i n order to build momentum

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Promotional Video

• 3-minute promotional video• Aim: Get across the message that there is solidarit y amongst all

people active in the field of rare diseases and str ess the international dimension of the campaign

• Patient led and patient focused• Minimal use of language• Produced by Burson Marsteller + ANIMO (pro bono) • Can be used to introduce national / local events• Viral campaign during FebruraryVia: website, newsletter, NAs, country organisers, Friends of RDD, RDD mailing list, RDD social media

Everyone will be encouraged to pass it on!

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Joint Action

Symbolic act / gesture that we can communicate abou t and could attract some media attention

• Inexpensive and easy to organise as part of existing activities• photo opportunity for media• photo can be used video next year

What about holding hands and raising them at 12noon CET ?

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EURORDIS Event Brussels

• IPC at Residence Palace – 29 Feb

• Advocacy focus: Rare Disease Budget in EU 3rd Publ ic Health Program + 8 th EU Research Framework Programme (2014-2020)

• Tools: Position papers RD as a Public Health Priori ty (endorsed by NAs) + DG SANCO video + RDD video

• Speakers targeted: Commissionner Dalli, Commissionne r Quinn, MEPs Antonyia Parvanova+ Danish EU Presidency, First Lady of Georgia (WHO)

• Synergy Gala Dinner same day + ECRD 2012 Brussels• Partners: EURORDIS event with support of DG SANCO+EUCERD + EMA/COMP + DG SanCo + CEF + ERTC

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RDD European event – initial ideas

• Message: RD as a successful model of EU Solidarity (in terms of access to diagnosis, treatment and care)

• Target: Expand target audience to Media, MEPs , EUC ERD national representatives and WHO, Council of Europe , Perm Reps, in addition to RD community, patients, European federations, researchers, industry, DG SANCO and DG Research.

• Strategy: Demonstrate the value added of the European model in the field of RD; its usefulness to regular EU citizens, good return to investment , a model that is being emulated outside of the EU

Make it understandable for people outside of RD com munity –maybe invite a journalist as facilitator

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RDD European event – initial ideas

Examples of positive results thanks to EU policy:

� Sharp decrease in biliary artresis (rare congential disease) - halfcases compared to 10 yrs ago (EUROCAT)

� Life expectancy doubled for CF patients compared to 20 yrs ago� Rare diabetes diagnosed earlier (EURO WABB)� Rare cancer research helping understand common diseases

(RARE CANCER)� Protocols for Duchenne (CARE NMD)� Other pilot ERNs?

DG SANCO videohttp://ec.europa.eu/eahc/health/Rare_Diseases_confe rence_2011_video.html