Non-profit medical institution which supports research and development of treatments and cures of genetic disorders. With details on volunteer programs.

Employs a team of specialist advisers which provide help, support and advice to patients, families, and health professionals. Details fund raising activities and events.

Aims to raise awareness about the genetic condition through information dissemination campaigns for health professionals, patients and the public.

Charitable organization which provides a support network for patients through education, advocacy, partnerships, and research.

Non-profit organization which aims to provide resources for the treatment, prevention and cure of the disorder. Also holds the Peter Lowry Family Assistance fund.