Fanconi Anemia Support Vietnam
Supporting families living with Fanconi Anemia in Vietnam
Hỗ trợ bệnh nhân và gia đình mắc bệnh Fanconi tại Việt Nam.
FASV assists individuals and families affected by FA in Vietnam, with special attention to the issues specific to our region. Activities organised with the National Institute of Hematology and Blood Transfusion continue under FASV, including FA family meetings in Hanoi and future host cities, a family retreat, and fundraising days in Hanoi and Ho Chi Minh City.
Start here
Newly diagnosed? Start here.
A diagnosis of Fanconi Anemia raises many questions at once. These three pages are the quickest way to get oriented — whether you are a parent, a patient, or a doctor looking for local contacts.
Just diagnosed
What the diagnosis means, which specialists are involved, and what the first hospital visits usually cover.
What is FA
Fanconi Anemia explained in plain language: how it is inherited, what it does to the bone marrow, and what it means long term.
Get support
Talk to other families, join a meeting in Hanoi or Ho Chi Minh City, and find the clinical team that knows FA.
What is FA
Fanconi Anemia, explained simply
A rare, life-limiting genetic disorder. It causes bone marrow failure in children and a predisposition to gynaecological, head and neck cancers, together with other complications both in childhood and in later life.
It is not just pain. It is a complete physical, mental and emotional assault on the body — and it is why families should not have to work it out alone.
FA at a glance
The essentials, in four lines
23
Genes identified
2 parents
Must be carriers
1 in 130,000
Births worldwide
1st decade
When marrow failure usually starts
What it means
Creating lifelong impact
Because all facets of this disease are interconnected, progress in one area lifts the others — better testing, earlier detection, safer transplant, and families who are not left guessing.
FA is inherited in an autosomal recessive pattern, caused by a defect in the body’s DNA repair system. Cells from people with FA break and rearrange their chromosomes more easily — which is also how FA is tested.
Gene count and clinical summary drawn from Fanconi Cancer Foundation and international FA literature. Always confirm details with your treating team.
How we help
Finding care, connecting families, sharing what we learn
We point families to clinicians who already know Fanconi Anemia — haematology at the National Institute of Haematology and Blood Transfusion in Hanoi, and paediatric teams in Ho Chi Minh City.
We organise family meetings in Hanoi and in future host cities, and a family retreat where parents and children can meet others walking the same road.
And we pass on reliable information about FA, linking Vietnamese families to the international FA community so no one has to work it out alone.
Support
You are not doing this on your own
FASV is a membership-based organisation. Joining is free, and it puts you in touch with other FA families in Vietnam and with the international network behind them.
- Talk to parents who have already been through a diagnosis
- Family meetings in Hanoi and Ho Chi Minh City
- Help understanding test results and treatment options
- An introduction to the Fanconi Cancer Foundation’s family network
Our international colleagues
Part of a worldwide network
Fanconi Anemia is rare everywhere, which is why the organisations working on it share research, registries and clinical guidance across borders. These are the groups FASV works alongside and learns from.
Parent organisation
Fanconi Cancer Foundation
FASV acknowledges the generous support of the Fanconi Cancer Foundation (FCF) in the United States. FCF funds FA research worldwide and runs the international family network that Vietnamese families can join.
Where to find us
Clinical contact in Hanoi
Our clinical contact point is at Tam Anh Hospital in Long Bien, Hanoi. If you are a family looking for advice, or a clinician looking for a referral pathway, this is the fastest way to reach someone who knows FA.
- Dr Tran Thi Tra Phuong — clinical lead contact
- Tam Anh Hospital, 108 P. Hoang Nhu Tiep, Bo De, Long Bien, Hanoi
- Phone (+84) 987 733 966
- Email traphuonghmu@gmail.com
Community
Join the FASV network
Fanconi Anemia Support Vietnam is a membership-based organisation. Please sign up now — it is free — so we can keep in touch from time to time and strengthen the network of FA family and friends.