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. Peer support 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.fi www.rarelink.fi www.eurordis.org