FSHD Muscular Dystrophy
FSHD (Facioscapulohumeral Muscular Dystrophy) is a rare, genetic disease that causes progressive muscle atrophy and weakness, mainly in the face, shoulders, arms, and legs, and can spread to the whole body over time.
According to research statistics, in the world, 1 in every 8,000 people has the diseasefacial-shoulder-arm dystrophy (FSHD).
In Vietnam, it is estimated that more than 10,000 people have FSHD but the majority are still undiagnosed.
In Vietnam, it is estimated that more than 10,000 people have FSHD but the majority are still undiagnosed.
60+
Test kit sent to Vietnam
1000+
In Vietnam
100+
Access to information
1 Million
World FSHD community
About Us
FSHD Vietnam is a non-profit group, connecting the community of Facioscapulohumeral Muscular Dystrophy (FSHD) patients in Vietnam, helping to advise and update information on the state of scientific research and treatment of the rare disease FSHD in the world, supporting patients with FSHD genetic diagnostic testing in the US completely free of charge, encouraging a spirit of optimism and healthy living.
Our Operations
- In Vietnam, very few people know about FSHD.
We communicate to raise social awareness so that FSHD is widely disseminated and properly understood, so that no one is left behind.
Raise public awareness about FSHD
Diagnostic Support
- - Free international testing registration consultation
- Send test kits to patients
- Instructions on how to properly take samples
- Support sending samples to the US
- - Connecting patient to patient - so no one is alone with FSHD.
- Connecting families with the patient's family - to gain strength.
- Connect the FSHD community with doctors, experts, scientists - to have a strong fulcrum.
Global Connection
- We listen, share, and work with patients and families to adapt to FSHD, have the strength to live, and light up hope every day.
Understanding Companion
- FSHD Intensive Research Center - Dr. Peter & Takako Jones Lab (MyFSHD organization - University of Nevada, USA) have developed a worldwide accessible diagnostic method to identify the gene for facial-shoulder-arm dystrophy FSHD.
Instead of complicated and high-cost blood tests, this method uses saliva samples to analyze genetic and epigenetic characteristics, accurately diagnosing FSHD type 1 and FSHD type 2 muscular dystrophy.
You can register to receive a free test kit and get a sample to get a clearer answer about your condition.
Free Diagnostic Tests
NEWS
REGISTER TO RECEIVE SUPPORT CONSULTATION
MyFSHD UNITED STATES
Dr. Research Center Jones Lab
Address: University of Nevada, Reno, Nevada, United States
FSHD VIETNAM
Ms. Flower
0768291089
nguyenhoa.dav@gmail.com
Ms. Kathy
kathyvn@gmail.com
CONTACT
Address: Hoan Kiem, Hanoi,
Vietnam
Vietnam
