- British Columbia Neurofibromatosis Foundation
- Aims to empower and improve lives of people affected by the genetic disorder through support services, awareness campaigns, and treatment research funding.
- Children’s Tumor Foundation
- Non-profit medical institution which supports research and development of treatments and cures of genetic disorders. With details on volunteer programs.
- Neurofibromatosis Association
- Employs a team of specialist advisers which provide help, support and advice to patients, families, and health professionals. Details fund raising activities and events.
- Neurofibromatosis Association of Australia
- Focuses on supporting members, raising public awareness, and promoting research on the disease. Posts a membership application form and event updates.
- Neurofibromatosis Clinics Association
- Aims to raise awareness about the genetic condition through information dissemination campaigns for health professionals, patients and the public.
- Neurofibromatosis Incorporated
- Charitable organization which provides a support network for patients through education, advocacy, partnerships, and research.
- Racing for Research
- Contains articles about research updates, shows team photos, and provides details on upcoming fundraising events.
- Texas Neurofibromatosis Foundation
- 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.
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