MCT8 - AHDS Foundation
Our Foundation is made up of a group of passionate parents and 100% volunteer-based.
We are striving to find a cure; improve the quality of life and potential of our children; support hundreds of families around the world; share hope for a brighter future; learn from our collective experiences and; raise awareness of this ultra-rare condition with doctors, researchers and the general public.
Our children with MCT8-AHDS have many challenges to overcome, but we are stronger facing these together. Our activities include:
Increase useful medical research:
- Analyze best MCT8-AHDS medical research projects and selecting researcher(s) for donations.
- Engage more researchers in research.
- Create or adhere to a Patient registry.
- Build a tissue donation program.
- Further develop our small Grants program to help families in need.
- Create a Resource Parenting program to support parents needing emotional or practical help.
- Enable easier access to treatment.
Raise awareness of MCT8-AHDS
- Maintain links with rare disease and medical organizations around the world.
- Administrate a public Facebook page with information and resources.
- Collaborate with International Day for Rare Diseases.
- Promote 8th October as a day for awareness raising.
- Educate doctors about the existence of the syndrome so they can diagnose as fast as possible.