Support we offer
We intend to offer a range of support for patients and their families as we move forward. Including a social group 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 provide signposting to other organisations and support services
- Information about government initiatives about new medical research
- For UK patients pathway to the a specialist national Fahr's Disease clinic (this is an NHS clinic which has a number of requirements to be met prior to referral)