We intend to offer a range of support for patients and their families as we move forward. Including a social groups for people to meet in person to help share their stories and be in an environment of similar people who have a greater understanding of their situation, and we are also developing an online area for people to speak and share their concerns and provide mutual support. 

At present we offer: 

- A call with our founder to help speak through concerns 

- An email dialogue to help provide key medical information, discuss concerns and to provide signposting to other organisations and support services

- Information about government initiatives about new medical research