I became a “rare leader” in 2009 when my eldest son was diagnosed with the ultra-rare genetic condition Fibrodysplasia Ossificans Progressiva (FOP). Since then, as a volunteer with zero experience, I’ve setup a patient organisation, worked with researchers, pharma, and doctors, been published, stood up and given presentations. Hopefully, my efforts have gone some way to change the world for the better: for rare-diseases and of course closer to home, our FOP community.
Some might ask, how can you achieve this? You don’t do it by yourself! Along with my wife, family, friends, and other leaders, Beacon has become a guiding light for my patient organisation journey. Beacon’s programmes, trainings, webinars, support, student voice prize, connections, and of course rarechat sessions, have all been fantastic.
As an organisation, Beacon stands out in that it exists to support ALL patient organisations. While rare disease organisations are fighting their own battles, many of the challenges they face are the same. Beacon connects these organisations and helps them to find their strength together. It gives patient organisation leaders the knowledge, tools, and confidence to achieve their potential. Ultimately, strong patient organisations are what make the difference for the communities they support and serve.
As a patient organisation leader, you quickly learn that it’s about the journey, and Beacon is there, lighting the way!