Bone Marrow Failure Syndrome Support Organisations
If you or a loved one has been diagnosed with a Bone Marrow Failure Syndrome, the following organisations offer support and a wealth of information.
We are grateful to be connected with organisations across the world who are united in the search for answers about Bone Marrow Failure Syndromes.
Maddie Riewoldt's Vision Telehealth Nurse
As Bone Marrow Failure Syndromes are rare, many patients and families feel overwhelmed, isolated and in need of support when they receive a diagnosis and throughout treatment.
Our Telehealth Nurse provides information and resources about Bone Marrow Failure Syndrome conditions, symptoms, tests, treatments and management.
Aplastic Anemia & MDS International Foundation (AAMDSIF)
Website: aamds.org
Email: [email protected]
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)
Website: theaat.org.uk
Email: [email protected]
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)
Website: fanconi.org
Email: [email protected]
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)
Website: fasa.org.au
Email: [email protected]
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
Website: sdsalliance.org
Email: [email protected]
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)
Website: shwachman-diamond.org
Email: [email protected]
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
Website: teamtelomere.org
Email:[email protected]
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.
The Straight & Marrow Podcast
Website: straightandmarrow.net
In this podcast, nurse consultants and practitioners Yvonne, Ming and Alex, discuss all things allogeneic bone marrow transplant from pre-transplant considerations to survivorship. They use experiences of health care providers, patients and carers — with current evidence to “keep it straight”.
Listen on Spotify, Apple Podcasts and more.
