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 voz de los pacientes de enfermedades raras en EuropaEURORDIS La voz internacional de las personas que tienen enfermedades rarasRare Disease International Reuniendo a pacientes, familiares y expertos para compartir experiencias en un foro moderado en distintos idiomas. RareConnect El Programa Rare Barometer es una iniciativa de EURORDIS que realiza encuestas para transformar las experiencias de los pacientes con enfermedades raras en cifras que puedan compartirse con los responsables políticos.Rare Barometer Una campaña internacional de sensibilización que se celebra todos los años el último día de febrero, El Día de las Enfermedades Raras es una iniciativa de EURORDISRare Disease Day Únete al mayor grupo de partes interesadas en toda Europa, en la Conferencia Europea sobre Enfermedades Raras y Medicamentos Huérfanos que se celebra cada dos años. ECRD es una iniciativa de EURORDISEuropean Conference on Rare Diseases