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NATIONAL ALLIANCE OF PEOPLE WITH RARE DISEASES

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Contact person
Mr. Vladimir TOMOV

Mobile Phone:
(+359) 888 323 748

E-mail:
tomov@gaucherbg.org

Postal Address:
59-63 Dragan Tsankov Str.
1000 Sofia

During the last years the situation of the people with rare diseases is getting better with the help of some European initiatives. In almost all European countries there are patient associations which strengthen the social position and the influence of the people with rare diseases, create contacts between people, concerned by the same disorder, spread information about diagnosis, health care, treatment and lifestyle of people with rare diseases. That’s why the National Alliance of People with Rare Diseases has enormous importance for all.

The main purpose of the National Alliance is to be a link between the people with rare diseases and the representatives of the social and healthcare system on the other side. The Alliance works for the protection of one of the principal human rights – the right of timely and equal medical care. The organisation also lobbies for the assumption of adequate laws in the field of the protection of the rights of the people with rare diseases.

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Last modification: 10:29 22.08.2008
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