Rob Camp

  • Patient Engagement Senior Manager - CABs

Rob Camp

Rob Camp launched and is manager of the EURORDIS Community Advisory Board Programme aiming at establishing the necessary dialogue between the developers of health technologies with patients and/or their representatives.

Rob first started as a consultant for EURORDIS on the Rare!Together programme to help the creation of European Federations in rare diseases, and then in different projects such as Polka (evaluation of Centres of Expertise from the Patients and Healthcare professionals' perspectives), then joined the DITA task force (notably on the patient survey on off-label use).

Rob is also a Summer School trainer, and was Communication Manager of the European Patients' Academy (EUPATI) until 2017.

Prior to EURORDIS Rob worked in patient advocacy and treatment activism in Barcelona, including for the European AIDS Treatment Group, which is where the EATG Community Advisory Board started. In 1997 he became a member of the Board of Directors, then Training Coordinator, Editor of the Newsletter, and Executive Director.

He also became very active internationally and worked for both Treatment Action Group (TAG), US, 2003 - 2007 as Antiretrovirals Project Director and in AIDS Treatment Activists Coalition (ATAC), US, 2003 - 2013.

Rob was trained as an architect. He lives in Barcelona. He speaks Spanish, some Catalan and of course English.

Telephone: +34 600 20 74 55

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