Patient advocacy
We provide support to non-profit organisations that help people living with rare and ultra-rare diseases.
Patient advocacy groups
Find out more below about the groups that we are actively supporting.
Tyrosinemia Society
The Tyrosinemia Society is the first and only international patient advocacy group for patients and families affected by Tyrosinemia that is led by a healthcare professional and a mother of two patients with Tyrosinemia.
GAETQ
The Groupe d’Aide aux Enfants Tyrosinemiques du Quebec (GAETQ) in Canada was founded by parents who wanted to give themselves the means to address their child’s illness. The group provides resources for parents to meet the needs of their child with HT-1.
AKU
The Alkaptonuria (AKU) Society supports patients and families, builds stronger communities and support networks as well as funding medical research and clinical trials to find treatments for AKU.
NOTA
The Network of Tyrosinemia Advocates (NOTA): Starting as a simple Facebook Group, NOTA is today a large community of families and friends who are or know someone who is affected by Tyrosinemia.