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The Finnish Network for Rare Diseases: Creating Connections through Cooperation in Finland

The Finnish Network for Rare Diseases consists of independent, non-governmental organisations and foundations that work for the interests of rare disease patients. The network represents and promotes the interests of rare disease patients through its member organisations’ expertise and experience in the field. The funding for the network comes from Finland’s Slot Machine Association.

The main goal of the network is to improve the conditions of people with a rare disease or disability by

  • co-operating with specialists, service providers, patient organisations and individual patients and their families
  • raising public awareness
  • influencing and informing decision makers, professionals and experts
  • sharing information and knowledge

The Finnish Network for Rare Diseases creates connections through cooperation by acting as a link between the rare disease patients, the professionals and experts of the Finnish health and welfare system, and the decision-makers. Moreover, the network cooperates both nationally and internationally, and participates in finding channels of influence on both national and EU-levels.

With the aim of reaching all the rare disease patients in Finland, the network can be considered as a prominent part of the Finnish welfare system. The network - being not a patient organisation or an alliance as such - bases its work on rare disease professionals instead of being dependent on volunteer resources alone. The member organisations of the network operate both independently and as a part of the network.

The network gathers information on rare diseases and current issues related to these, provides passageways to peer support and networking, and advocates the needs of people with rare diseases.
The members of the network have meetings on a regular basis, and the network arranges gatherings for both professionals and representatives of different patient organisations.

The website www.harvinaiset.fi is maintained by the network, and it provides information on rare diseases and current issues related to these. On the website people with rare diseases, together with professionals and organisations working with them, are able to connect and cooperate, as well as find information in their own language.

The members of the Finnish Network for Rare Diseases are:

  • Finnish Association of People with Physical Disabilities
  • Finnish Association of Ultra Rare Diseases
  • Finnish Central Organisation for Skin Patients
  • Finnish CP Association
  • Finnish Deafblind Association
  • Finnish Epilepsy Association
  • Finnish Federation of Hard of Hearing
  • Finnish Federation of the Visually Impaired
  • Finnish Heart Association
  • Finnish Kidney and Liver Association
  • Finnish Migraine Association
  • Finnish Neuro Society
  • Finnish Neuromuscular Disorders Association
  • Finnish Parkinson Association
  • Finnish Patient Association
  • Finnish Rheumatism Association
  • Inclusion Finland KVTL
  • The Organisation for Respiratory Health in Finland
  • ORTON Foundation
  • Rinnekoti Foundation Norio Centre

Contact information: harvinaiset [at] harvinaiset.fi

 

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The posters the Network has produced to the ECRD-conferences

ECRD 2016 Edinburgh

ECRD 2014 Berlin

ECRD 2012 Bryssels

ECRD 2010 Krakow

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