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
Email: rob.camp@eurordis.org

 
 
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