Alstrom Syndrome UK is an award winning charity who pride themselves on their personalised family support service, research initiatives and multi-disciplinary clinics where families can receive treatments and advice from medical experts. Alstrom Syndrome is an ultra rare, life limiting genetic condition which can affect all the main organs and can lead to progressive sight and hearing loss. Alstrom Syndrome UK (ASUK) is a patient lead charity who are passionate about making a difference to the lives of people who are affected by Alstrom Syndrome. Having fun is important too and ASUK organise fun activities and a family and professional conference where researchers, clinicians and families come together to learn more about this rare condition, discuss research opportunities and connect with each other. Strength for today, hope for the future