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.

Empower families

  • 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.