I’ve been involved with ASUK for about 18 years. I’m an Alström patient and also a trustee on the board, my main role is being a patient advocate, making sure the voice of people with AS are at the heart of the charity. I am a Guide Dog Owner and also work with Guide Dogs in the role of Service User Representative for the Kent team. Having Alström Syndrome I have always had an interest in ASUK and how they support their patients. I have a close relationship with many other patients and feel that I can use my skills and passion to make a difference. I decided to join the Board of Trustees to offer a patient’s perspective and to ensure that the patients voice was being heard at all levels of the charity. I want to make a difference and ensure that patients and their families are getting the best possible support from ASUK. I am now a volunteer for ASUK and support the work of AS Global. I hope to bring an insight as to what it is like to live with a rare disease. I also hope to help to further research and increase knowledge and awareness.