Photo by Jouko Karanka
Partners of HARSO
Patient organisations for rare diseases and people with rare diseases all together
All HARSO activities are driven by patients with rare diseases and patient organisations representing rare disease sufferers. We aim to be the advocate of sufferers of rare diseases and to make our voice heard, with the intention of making the treatment paths of patients with rare diseases fair, equal and well-integrated.
Cooperation with the Ministry of Social Affairs and Health
In 2013, the Rare Diseases Working Group of Finland’s Ministry of Social Affairs prepared a national programme for rare diseases. HARSO has been involved in its operations from the start. In 2012, we organised the EuroPlan conference together with Eurordis, the Ministry of Social Affairs and Health, the Finnish Association of People with Physical Disabilities, the “Harvinaiset”, the Finnish network for rare diseases, and patient associations for rare diseases. At the EuroPlan conference, the patient organisations had to opportunity to comment on the national programme for rare diseases in accordance with the requirements of Eurordis.
Rare Diseases Units (Hospital District of Helsinki and Uusimaa, Turku University Hospital, Kuopio University Hospital, Oulu University Hospital, Tampere University Hospital)
Five rare diseases units have been founded in university hospitals around Finland in five hospital districts. HARSO has collaborated with multi-disciplinary specialists to influence the implementation of rare diseases units by contributing ideas and opinions related to the national programme.
Social Insurance Institution of Finland Kela
Kela has a very important role in the treatment path of rare diseases. So far, we have cooperated with Kela’s experts only through the working group of the Ministry of Social Affairs and Health, and patients with rare diseases take part in training sessions organised by Kela.
Nordic network on rare diseases and SBONN
SBONN is the rare diseases Nordic network of patient organisations. HARSO collaborates and networks at SBONN meetings. We receive a great deal of valuable know-how from more experienced umbrella organisations in Sweden, Norway, Denmark and Iceland. The Nordic network for rare diseases is a network of specialists created by the relevant ministries in the Nordic countries and HARSO is also represented.
Eurordis is a non-governmental alliance of rare disease patient organisations in Europe. The role of HARSO in international activities is only starting to develop. We cooperate through commitment to the principles of Eurordis on rare diseases and as a patient-driven umbrella organisation we a full Eurordis member for Finland, with voting rights.
'Harvinaiset' Network for Rare Diseases
The ‘Harvinaiset’ network for rare diseases is a national network of social and health organisations that work with patients with rare diseases. The organisations involved in the network’s operations are non-profit associations or foundations that represent or produce services for people with rare diseases or debilitating conditions. The cooperation between HARSO and the ‘Harvinaiset’ network is continuous and will increase with growing resources.