Dorica Dan

  • Officer

Dorica Dan

Romanian Prader Willi Association (RPWA), Romania

e-mail: dorica.dan@eurordis.org

www.apwromania.ro

Dorica Dan was elected to the Board of Officers in 2011 and has been a member of the EURORDIS Board of Directors since 2007.

Dorica is the mother of a daughter who was diagnosed with Prader Willi Syndrome at the age of 18.

Dorica initiated RPWA (Romanian Prader Willi Association) in 2003, established RONARD (Romanian National Alliance for Rare Diseases) through a project funded by CEE Trust in 2007 and Romanian Rare Cancers Association in 2011. She has taken part in the opening of the first Centre for Information about Rare Genetic Diseases in Romania and initiated the National Plan for Rare Diseases in Romania. In June 2011 she has opened the Pilot Reference Center for Rare Diseases "NoRo" through a project implemented in partnership with Frambu Norway and funded by Norway Grants.

Today she is the chair of the Romanian Prader Willi Association, Romania (RPWA); president of the Romanian National Alliance for Rare Diseases(RONARD); president of the Romanian Association for Rare Cancers and the coordinator of the Centre for Information about Rare Genetic Diseases and NoRo Center. She is member of  IPWSO (International Prader Willi Syndrome Organization) board, and is currently a EURORDIS EUROPLAN advisor.

Dorica represents EURORDIS at International Conferences throughout Europe and beyond, and is part of the Commission Expert Group on Rare Diseases.  She is a member of the Programme Committee for the EURORDIS Conference on Rare Diseases and Orphan Products 2016 Edinburgh. Dorica is also part of the interim working group for the European Year for Rare Diseases. She is the Work Package leader of the EUCERD Joint Action Working for Rare Diseases (EJA) Work Package 6 focusing on Specialised Social Services, and is a member of the Council of National Alliances. 

 
 
La voix des patients atteints de maladies rares en EuropeEURORDIS Donnant la voix, à l'international, aux personnes vivant avec une maladie rareRare Disease International Pour rapprocher patients, familles et experts sur un forum modéré multilingue, où partager leurs expériences. RareConnect Le programme Rare Barometer est une initiative d’EURORDIS qui vise à réaliser des sondages pour transformer les expériences des patients de maladie rare en faits et chiffres à communiquer aux décideurs politiques.Rare Barometer Campagne internationale de sensibilisation organisée chaque année le dernier jour de février, la Journée Internationale des Maladies Rares est une initiative d'EURORDISRare Disease Day Participez au plus grand événement réunissant tous les acteurs des maladies rares en Europe lors de Conférence européenne bisannuelle sur les maladies rares et les médicaments orphelins (European Conference on Rare Diseases and Orphan Products, ou ECRD). L'ECRD est une initiative d'EURORDISEuropean Conference on Rare Diseases