EQUAL OPPORTUNITIES FOR PEOPLE WITH PRADER WILLI AND OTHER RARE DISEASES

Submitted by alexandra persa on Wed, 03/28/2012 - 16:17
In June 2005, the Romanian Prader Willi Association applied for a project and it was accepted and implemented, ?Equal opportunities for people with Prader Willi and other Rare Diseases?, financed by Co-operating Netherlands Foundations for Central and Eastern Europe- CNFCEE. 
Objectives:
 to improve the access to information on rare diseases for patients, their families and specialists;
 to create a national network of families and specialists.
 
          The achievements of this project include:
-Translating and printing of the Educational Packages, offered by the International Prader Willi Syndrome Organization. They consist of three parts: one for doctors, one for parents and one for the crisis situation. Once we have made the translations, IPWSO- through our twin partner, the German PWS Association, printed the translated documents.

-Establishing support groups for parents of the children with rare genetic disorders at the hospital for rehabilitation from Dezna, Arad County, encouraging the exchange of experiences and knowledge. 

-Finishing the renovation of the Center for Information about Rare Genetic Disorders. 

-Organizing the Conference about Prader Willi Syndrome as a satellite symposium of the Balkan Congress for Endocrinology in Bucharest, in close partnership with the Romanian Endocrine Society. For the conference activities, we have invited professionals from IPWSO and BAPES ? Bulgarian Association for Promoting Education and Science, the first association from East of Europe that have established a Center for Rare Diseases in Bulgaria. The main achievements of this conference were: new Romanian doctors interested in PWS and actively involved in RPWA and the next World Conference about PWS will be organized by RPWA in Cluj ? Napoca, June 2007, for the first time in an emerging member country, with the participation of over 600 people from over 60 countries.