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

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

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 cureBroad diversity of disorders and symptoms

Common problems for patients

Lack of access to correct diagnosisDelay in diagnosisLack of quality information on the

disease/disability Lack of scientific knowledge of the

disease/disability Heavy social consequences for people with the

rare disease/disabilityLack of appropriate quality healthcare Inequities and difficulties in access to treatment

and care

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)

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)

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

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

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

Eurordis- European Organisation for Rare Diseases

Non-governmental patient-driven allience of patient organisations and individuals

Founded in 1997Represents 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-groupsRD-issues on the agenda in EU: e.g. European

Council Recommendation on Rare Diseases

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

Peer support

Network’s member organisations organise various peer support groups, meetings and rehabilitation courses

Network as itself doesn’t organize peer support groups

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

Organisations in the network

Finnish Epilepsy AssociationPulmonary Association Heli Finnish Central Organisation for Skin PatientsFinnish Association of People with Physical

DisabilitiesFinnish Association for Persons with Intellectual

DisabilitiesFinnish Federation of Hard of HearingFinnish Neuromuscular Disorders Association Finnish Kidney and Liver Association

Finnish Federation of the Visually Impaired (FFVI)Rehabilitation Home for Children (Rinnekoti-

Säätiö)Finnish MS SocietyFinnish Parkinson AssociationFinnish Patient AssociationFinnish Rheumatism AssociationFinnish Heart AssociationFamily Federation’s Medical Genetics Clinic

For further infomation:

www.harvinaiset.fiwww.rarelink.fi

www.eurordis.org