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 lifethreatening
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
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
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 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
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 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
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
For further infomation:
www.harvinaiset.fi
www.rarelink.fi
www.eurordis.org