Pat John and Susan travelled to London to the official launch of the Route Map for Vasculitis with Genetic Alliance UK. (funded by the Dept of Health).
Patricia gave an excellent presentation on the process of creating the Route Map.
About 80 people attended the meeting with representatives from University Hospitals, Consultants, Hospitals, Department of Health, Medical Advisory Service, other Rare Disease Representatives, Association of Genetic Nurses and Counsellors plus many more..
The Route Map for Vasculitis was very well received and there were many favourable comments. All the RouteMaps we had taken to the meeting soon disappeared.
It was an excellent day for networking with other rare disease organisations and other professionals involved with Rare Diseases.
Below is a link to a photo taken with the other chosen Rare Disease Representatives who have taken part in the 2 year project.