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 voce dei malati rari in EuropaEURORDIS Rare Diseases International, la voce internazionale dei malati rariRare Disease International RareConnect è un'iniziativa di EURORDIS che mette in contatto malati, famiglie ed esperti per condividere esperienze in un forum multilingua e moderato RareConnect Il Programma Rare Barometer è un’iniziativa di EURORDIS volta a condurre indagini con l’obiettivo di trasformare le esperienze delle persone affette da malattie rare in cifre e fatti che possono essere condivisi con i decisori politici.Rare Barometer La Giornata delle Malattie Rare, una campagna di sensibilizzazione internazionale che si svolge l'ultimo giorno di febbraio di ogni anno.Rare Disease Day La Conferenza Europea biennale sulle Malattie Rare è il più grande incontro di soggetti interessati al tema delle Malattie Rare in Europa. L'ECRD è un'iniziativa di EURORDISEuropean Conference on Rare Diseases