Patient advocacy has always played a big role in the world of rare diseases. But as the industry has developed, it’s become clear that the patients really do need to be at the heart of the industry when it comes to orphan drugs. Patient involvement in clinical trials is of course crucial, but developers and CROs have discovered the hidden gold mine that is patient groups and advocates. When it comes to educating your market about diseases, symptoms, and treatments, patient advocates can prove to be valuable tools for developing markets.
Se we’ve put together a list of the top 10 most influential rare disease advocates on world wide web. From twitter and LinkedIn, to patient groups and personal websites, this bunch are taking the word about rare diseases to the masses, and uniting patients with all sorts of diseases under one banner.