Rob Camp

Rob Camp has been part of EURORDIS as a consultant in patient group growth since 2008.

His first project, Rare Together, helps national patient groups unite into European disease-specific federations. The Clinical Trials Charter helps patient groups, unified or not, to speak with a robust voice to sponsors when trials and other patient-centred schemes are put together.

POLKA, his most recent project, looks at quality of care in European Centres of Expertise. Rob also serves on their Drug Information Transparency and Access (DITA) task force and has recently finished a soon-to-be-opened questionnaire on Off-Label use.

Rob has been involved in the US AIDS Treatment Activists Coalition (ATAC) since January 2003, and in its Drug Development Committee. Rob has also served as co-chair of the DDC. He’s worked closely on getting DDC to meet with all the relevant pharmaceutical companies in HIV since 2004 (over 25 company meetings from 2003-2008). He helped put together two meetings with FDA (in 2003 and 2005).

He helped in implementing international patient advocacy and education in Europe. He worked with the European AIDS Treatment Group from 1995 - 2002, the final year and a half as Executive Director. He started in HIV advocacy in 1991 in Spain as a member of ACT UP Barcelona. He integrated into a Barcelona NGO as treatment counsellor and editor of their treatment bulletin. He then helped create two national treatment teams in Spain, FIT and GTT, both of which are still in action today.

 
 
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