Patient groups are essential partners for clinical research as they are usually the most invested, and can therefore drive drug development. Often, patient groups focus on a single disease, and so are prepared to focus all of their time on understanding that disease and seeking solutions for its treatment. However, patient groups cannot work alone; they require the expertise of other partners. Oliver Timmis of the AKU Society and Anthony Hall of Findacure believe that a collaborative approach to drug development for rare diseases is the best way forward, and explore the 10 steps leading to clinical research in this article.
http://jforcs.com/jcs/wp-content/uploads/2014/02/Collaborative-Drug-Development-for-Rare-Diseases.pdf