October 25, 2006 2nd International Conference on Rare Diseases and Orphan Drugs “Patient and...

October 25, 2006October 25, 2006

2nd International Conference on Rare Diseases and Orphan Drugs

“Patient and Family Needs across the Lifespan”

October 25, 2006, Madrid

Anders OlausonÅGRENSKA, Chairman, GothenburgHSO, Member of the Board, GothenburgEURORDIS, Member of the Board, ParisEPF, President, BrusselsEesti Agrenska Foundation, Chairman, Estonia

HOSPITAL

SCHOOLSOCIAL

REGULATION

FAMILYRELATIONS

“The life”


HOSPITAL

SCHOOL

SOCIALREGULATION

FAMILYRELATIONS

“The life”

Excludedinstead of

Included


•““In order to understand how it In order to understand how it is to be a parent to a disabled is to be a parent to a disabled child – you have to be a parent child – you have to be a parent to a disabled child yourself!”to a disabled child yourself!”

Åke Martinsson, SwedenÅke Martinsson, Sweden


What is Ågrenska?What is Ågrenska?

• Programs:Programs:– Family programFamily program– Adult programAdult program– Respite and summer Respite and summer

serviceservice– EducationsEducations– ADHD counselorADHD counselor– Family support unitFamily support unit– Training program to get a Training program to get a

jobjob– Staff who has a disabilityStaff who has a disability– Eesti AgrenskaEesti Agrenska– Agrenska FriendsAgrenska Friends– Agrenska Virtual Agrenska Virtual

AcademyAcademyThe Board


Ågrenska is a International Centre of Knowledge

Queen Silvia inaugurates “the Queen Silvia Auditorium” at Agrenska Academy in 2001.


Ågrenska Family ProgramÅgrenska Family Program

• Rare disorder Rare disorder

• The whole family + family related staff The whole family + family related staff

• Increase copingIncrease coping

• Part of the (Re)hability process Part of the (Re)hability process

• 4 parallel program:4 parallel program:– The child with the diagnoseThe child with the diagnose– ParentsParents– SiblingsSiblings– Family related ProfessionalsFamily related Professionals

• 20 stays per year20 stays per year

• From whole of SwedenFrom whole of Sweden

• More than 120 different diagnosis since the start More than 120 different diagnosis since the start in 1989 in 1989


Ågrenska 1990 - 2005Ågrenska 1990 - 2005

• 180 different forms of diagnoses180 different forms of diagnoses

• From all part of SwedenFrom all part of Sweden

• More than 2 400 visiting familiesMore than 2 400 visiting families

• More than 3 300 visiting parentsMore than 3 300 visiting parents

• More than 2 500 visiting children/ More than 2 500 visiting children/ adolescents who have a rare diagnoseadolescents who have a rare diagnose

• Nearly 3 000 visiting siblingsNearly 3 000 visiting siblings


Effects – families tell:Effects – families tell:

• Parents feel ”normal” for the first timeParents feel ”normal” for the first time• The family feel empowered, by meeting The family feel empowered, by meeting

other in the same situationother in the same situation• Parents get new knowledge, to take better Parents get new knowledge, to take better

care of their own lifecare of their own life• Children with the disorder meet other in Children with the disorder meet other in

the same situationthe same situation• Siblings meet other siblingsSiblings meet other siblings


Educational implications in Educational implications in RDRD

• Rare Diseases have a specific Rare Diseases have a specific implication on all aspects of life.implication on all aspects of life.

• Educational tools are also part of the Educational tools are also part of the treatment!treatment!


MethodsMethods

• Using a controlled and validated Using a controlled and validated observations material which is approved observations material which is approved by the University of Gothenburg by the University of Gothenburg

• Systematic observations of the children is Systematic observations of the children is performed in our school activities, during performed in our school activities, during the family programthe family program

• Lectures of the syndrome to parents and Lectures of the syndrome to parents and the children's accompanying professionalsthe children's accompanying professionals

• To report back and connect to the To report back and connect to the children's local teachers at homechildren's local teachers at home


Structured observationStructured observation

• Motor abilityMotor ability

• PerceptionPerception

• Social behaviorSocial behavior

• Speech and communicationSpeech and communication

• Learning strategiesLearning strategies

• Writing, reading and mathematicWriting, reading and mathematic


Diagnosis in our databaseDiagnosis in our databaseDiagnose N= Diagnose N=

Fragile X syndrome 30 Galaktosemi 4

Klinefleters syndrome 6 Marphans syndrome 11

Möbius syndrome 2 Neurofibromatoses 11

Noonans syndrome 9 OI 2

Prader Willie 13 Rubenstein Tabi 8

Silver Russel 6 Sotos 11

Sturge Weber 4 Tourettes syndrome 20

Treacher Collins 2 Tuberös Scleros 14

Williams syndrome 17 Acondroplasi 12

Albinism 9 Angelmans syndrome 12

Aperts syndrome 1 Aspergers syndrome 33

Beckers muscheldystrofi

7 22q11/catch 22 20

CDG 7 Charge syndrome 5

Cornelia de Lange 6 Crouzon syndrome 7

Dystrofica Myotonika 14 Ehlers Danlos syndrome

10

PKU/Fenylketonuri 9 LMBB 9

Cri du Chat syndrome 7 Turners syndrome 10


HDK + Ågrenska = true!HDK + Ågrenska = true!


MasterLabMasterLab

The purpose of MasterLab is to The purpose of MasterLab is to create a platform where different create a platform where different actors can meet and;actors can meet and;

• Exchange their knowledgeExchange their knowledge

• Create and develop new products Create and develop new products and/or servicesand/or services

• ResearchResearch


Design as a force of change in Design as a force of change in society. society. • Fight segregationFight segregation• Create accessibility Create accessibility • Broadening the view of me as a person Broadening the view of me as a person • Influence other areas of research e.g.; Influence other areas of research e.g.;

– ArchitectureArchitecture– TravelTravel– Leisure timeLeisure time– WorkWork


The Agrenska The Agrenska Virtual Virtual

International International AcademyAcademy• Virtual centre for Virtual centre for

researchresearch• Stimulate further and Stimulate further and

deeper research deeper research regarding rare diseasesregarding rare diseases

• Based upon experiences Based upon experiences from Agrenska from Agrenska programsprograms

• Holistic perspectiveHolistic perspective• International cross International cross

boarder cooperation'sboarder cooperation's• Scientific councilScientific council


Estland – Eesti AgrenskaEstland – Eesti Agrenska

Tammistu


ConclusionsConclusions

• The patient of the The patient of the twenty-first century twenty-first century – Difference from the Difference from the

pastpast

– Similarities with the Similarities with the pastpast

– Needs for todayNeeds for today

– Needs for tomorrowNeeds for tomorrow

The Swedish Vikings where the first Entrepreneur and the patients are today’s

October 25, 2006 2nd International Conference on Rare Diseases and Orphan Drugs “Patient and...

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