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

The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases