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The role of volunteers in activities supporting Rare Diseases Alliance

Domenii publicaţii > Ştiinţe medicale + Tipuri publicaţii > Articol în revistã ştiinţificã

Autori: M. Gafencu, G. Doros, M. Puiu, D. Dan, A. Balint

Editorial: nature publishing group, European journal of human genetics, Volume 16 Supplement 2 May 2008, p.427, 2008.


The problematic of Rare Diseases in Romania was a true Cinderella until 2000. In the latest years due to the initiative of NGO is this pathology caught the attention of medical people by the means of the model that was offered in Europe, where the role of volunteers derived from families, universities and NGO is become essential.
In the activity of NGO Save the Children, Timis branch in partnership with pediatricians and the University of Medicine and Pharmacy Timisoara was initially penciled with two Associations of Patients suffering of genetic diseases (Down syndrome and Prader Willi Syndrome). Using the young group of volunteers that have worked with patients suffering of Down syndrome and using the expertise of Genetic Chair, was initiated collaboration by many specialists and NGOs resulting the National Alliance of Rare Diseases in Romania. Now we have more than 15 Associations I the Alliance.
The Volunteers of Save the Children, Timis branch participated at the first National Conference of Rare Diseases (2007 Zalau, Romania). In collaboration with specialists we have trained a number of 20 young volunteers from Save the Children Timis. Now they are preparing the activities for a week dedicated for Rare Diseases in each February (mass media campaign, street campaign about this theme, round table with specialists, patients, volunteers and family patients).
The role of young volunteers within this Association was essential. The volunteers of Prader Willi Romanian Association and Save the Children Timis have coordinated the first activities for those pathologies patients.

Cuvinte cheie: voluntari, boli rare // volunteers, rare diseases