Presentation given by Rob Camp as part of a patient capacity building workshop entitled "Learn about Rare Disease patient networking via online patient communities & Searching for quality disease and medical information on the internet." which took place in Krakow, Poland on May 13 2010 as a satellite workshop to the 5th European Conference on Rare Diseases. Rob’s background includes serving as Executive Director of the EATG (European AIDS Treatment Group), the creation of an HIV organisation in Barcelona, the creation of national groups in Spain and other countries (organising seminars on how to create organisations in EU Eastern States, Southern States), leading projects supported by the European Commission department for Public Health (DG SANCO), working on funding for NGOs. Rob is currently working half time in the US as liaison between patient organisations and the FDA, and spends the rest of his time in Europe. Rob speaks English and Spanish.

1. Reg’ authorities and social media “ There’s something happening here. And what it is ain’t exactly clear”, Buffalo Springfield, the great social media philosopher