Sharing stories, advice and well wishes with others is invaluable when you have a family member with a rare and debilitating illness.

One of the biggest things for me is PORT has given me hope that one day a cure will be found, it gives me comfort that I’m not alone in this battle and it’s given me support and friendship when I’m feeling alone and isolated.

This charity have an invaluable support platform, providing not only incredible contributions to research and treatments, but also providing sufferers and families with a voice.