World Orphan Drug Congress
World Orphan Drug Congress, Brussels, 15th-17th November 2016
On 15th November, I travelled to Brussels to represent Vasculitis Ireland Awareness at the 7th World Orphan Drug Congress in Europe. I secured a free place along with a colleague from the Northern Ireland Rare Disease partnership (James Cauldwell, Rare Cancers support group) and we travelled together to find out more about this area and how we as patient groups could expedite access to these important medications.
Perhaps at this stage it would be good to define Orphan drugs – according to European Medicines Agency they are ‘for the diagnosis, prevention, or treatment of a life threatening or chronically debilitation condition that is rare (affecting not more than 5 in 10,000 people in European Union) or where the medicine is unlikely to generate sufficient profit to justify research and development costs. […]