Harvinaiset – The Finnish Network for Rare Diseases

1. Harvinaiset – The Finnish Network for Rare Diseases Saara Paajanen - Finnish Association of People with Physical Disabilities   Pia Mölsä - The Finnish Association for Persons with Intellectual Disabilities

2. Definition of a rare disease • In Finland: when it affects less than 1 in 10 000 citizens (a bit over 500 Finnish people at the most) • In the European Union the ratio is 1:2000 • There are between 6000 and 8000 rare diseases worldwide

3. Characteristics of rare diseases • Often chronic, progressive, degenerative and life-threatening • Disabling: the quality of life of patients is often compromised by the lack or loss of autonomy • No existing effective cure • Broad diversity of disorders and symptoms

4. Common problems for patients • Lack of access to correct diagnosis • Delay in diagnosis • Lack of quality information on the disease/disability • Lack of scientific knowledge of the disease/disability • Heavy social consequences for people with the rare disease/disability • Lack of appropriate quality healthcare • Inequities and difficulties in access to treatment and care

5. Harvinaiset-network • Cooperation started in 1995 • The Ministry of Social Affairs and Health appointed central social and health organisations to work as resource centres • Until this year there were 10 organisations in the network: in 2009 the network expanded its cooperation and now includes experts in 16 major non-governmental organisations (NGOs)

6. The rare disease diagnoses were dealt between the organisations according to the main functional consequence (e.g. visual, hearing, mobility, etc.) • The network combines the medical diagnoses and the functional aspect • Has no official, judicial stand but works as a partnership network to coordinate Finnish rare disease work • The network is supported by Finland’s Slot Machine Association (RAY)

7. RAY is a NGO that has monopoly to slot machines and casinos in Finland • Support to social and health organisations • Funds dealt out by the government • The organisations in the network are regarded as equal partners and all the decisions are made in concensus • The costs of the network are divided equally between the organisations

8. Goal of the network To improve the conditions of people with rare disease/disability by • identifying the problems the people in these groups face • advocating for RD-groups in the society

9. Methods and tasks of the network • Cooperation with specialists, service providers and disability/patient organisations • Public statements and contentions: raises public awareness and influences decision makers • Facilitating the diagnosis based associations to share their experiences and best practices • Adaptation training (psycho-social (re)habilitation) services: helping people with disabilities adjust to and to live with their disability

10. Eurordis- European Organisation for Rare Diseases • Non-governmental patient-driven allience of patient organisations and individuals • Founded in 1997 • Represents more than 380 rare disease organisations in 39 different countries, covering more than 1200 rare diseases • The network cooperates with Eurordis and three of its organisations are actual members of Eurordis • Concentrates on EU-lobbying for RD-groups • RD-issues on the agenda in EU: e.g. European Council Recommendation on Rare Diseases

11. One door- many windows- project • Project started 2007 and continues until 2010. • The main goal of the project is to create a unique Internet portal focusing on accessibility, reliability and interactivity • This project also aims to unite the co-operation of the major diagnose based groups and organisations in Finland • Cooperation with the Nordic Rarelink-project

12. Peersupport • Network’s member organisations organise various peer support groups, meetings and rehabilitation courses • Network as itself doesn’t organize peer support groups

13. Dialogue between diagnose based associations and groups • One of the most important tasks of the network is to facilitate the diagnose based groups to share their experiences and best practices. • Network has kept meetings between the rare diseases groups during the One door- Many windows-project. • The new portal gives us way to improve the dialogue between the groups

14. Organisations in the network • Finnish Epilepsy Association • Pulmonary Association Heli • Finnish Central Organisation for Skin Patients • Finnish Association of People with Physical Disabilities • Finnish Association for Persons with Intellectual Disabilities • Finnish Federation of Hard of Hearing • Finnish Neuromuscular Disorders Association • Finnish Kidney and Liver Association

15. Finnish Federation of the Visually Impaired (FFVI) • Rehabilitation Home for Children (Rinnekoti-Säätiö) • Finnish MS Society • Finnish Parkinson Association • Finnish Patient Association • Finnish Rheumatism Association • Finnish Heart Association • Family Federation’s Medical Genetics Clinic

16. For further infomation:www.harvinaiset.fiwww.rarelink.fiwww.eurordis.org