If you or a loved one are newly diagnosed, the following organisations offer support and a wealth of information.
We also invite you to contact our telehealth nurse Mei Ling Yeh — she's there to support you and is just a phone call away.
We are grateful to be connected with organisations across the world who are united in the search for answers about Bone Marrow Failure Syndromes.
Aplastic Anemia & MDS International Foundation (AAMDSIF)
AAMDSIF was founded in 1983 by families who had nowhere to turn when their loved ones were afflicted with bone marrow failure disease.
Today, AAMDSIF is a world-leading nonprofit health organisation dedicated to supporting patients and families living with Aplastic Anaemia, myelodysplastic syndrome (MDS), paroxysmal nocturnal hemoglobinuria (PNH), and related bone marrow failure diseases.
The Aplastic Anaemia Trust (UK)
The Aplastic Anaemia Trust's mission is to enable vital research into the causes of aplastic anaemia and other rare bone marrow failures that ultimately leads to finding a cure, and to support everyone affected by them, so they can lead healthy and fulfilling lives.
Their Marrowkidz resource has lots of factsheets and video explainers for patients and their families, tailored to different age groups.
Fanconi Anemia Research Foundation (FARF)
The Foundation's mission is to find better treatments and a cure for Fanconi Anemia and to provide support services to affected families worldwide.
The Fanconi Anemia Research Fund (FARF) is the world leader in advancing research for better treatments and a cure for Fanconi Anemia. Founded in 1989 by parents Lynn and David Frohnmayer, FARF has supported 248 grants to 67 institutions and 163 investigators worldwide.
Fanconi Anaemia Support Australasia (FASA)
FASA brings together people and families affected by Fanconi Anaemia in Australia, New Zealand and beyond.
"We’ve learnt that hope is one of the most powerful forces in our lives. We would like this local support group to build on that hope." — Founders Barbara and Chris Hawkshaw.
Shwachman-Diamond Syndrome Alliance
The Alliance is a nonprofit aimed at accelerating research and therapy development for this rare disease. They see global collaboration as key.
Shwachman Diamond Syndrome Foundation (USA)
SDS Foundation is a not-for-profit, patient advocacy organization. Their motto: Support-Research-Cure
Their goals are to advocate and fund research towards improved treatment and a cure. They also provide educational services and emotional support to SDS families. They sponsor a bi-annual family conference which allows patients and their families the opportunity to hear and speak to members of their Medical/Scientific Medical Board, who are experts in various aspects of SDS.
SDS Foundation was founded in 1994 by Joan Mowery, mother of an SDS patient.
Team Telomere is a community for people with Telomere Biology Disorders.
Their mission is to provide information and support services to families worldwide affected by Dyskeratosis Congenita and Telomere Biology Disorders, to encourage the medical community’s research in finding causes and effective treatments, and to facilitate improved diagnosis by educating medical providers.