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. 

 
 
Голос пациентов с редкими заболеваниями в Европе The voice of rare disease patients in EuropeEURORDIS Сеть организаций, представляющих интересы пациентов с редкими заболеваниями их разных стран мираRare Disease International Социальная сеть RareConnect предоставляет пациентам, их семьям и специалистам многоязычную платформу для обмена информацией и опытом RareConnect Программа Rare Barometer — это инициатива EURORDIS, направленная на проведение исследований по преобразованию опыта пациентов с редкими заболеваниями в цифры и факты, которыми можно поделиться с ответственными руководителями. Rare Barometer День больных редкими заболеваниями – международная кампания по привлечению внимания к проблеме редких заболеваний, которая по инициативе EURORDIS ежегодно проводится в последний день февраляRare Disease Day Приняв участие в Европейской конференции по редким заболеваниям и орфанным препаратам (EUCERD), которая по инициативе EURORDIS проводится каждые два года, вы получите возможность побывать на самом представительном европейском форуме по проблемам редких заболеваний.European Conference on Rare Diseases