They provide support, information and advocacy for patients, their families, friends and carers. We are run entirely by a small, committed team of volunteers who are patients themselves and understand how challenging and isolating it can be to live with a rare long-term condition. New members often comment on how warm and supportive to each other we all are. We are passionate about providing the best possible service; everything we do is patient-led and we strive to do it with empathy and integrity. Patient support is always our first priority.