Facio-shoulder-arm dystrophy (FSHD) is a rare, genetic muscle disease that affects approximately 1 in 8,000 people globally regardless of age and gender.
Due to an error in the genetic structure, the disease causes progressive muscle atrophy, greatly affecting the patient's mobility and quality of life.
Faced with those challenges, FSHD Vietnam was established in 2022, as the first non-profit, volunteer community group in Vietnam dedicated to this syndrome. We operate with the mission of being a bridge, fulcrum and source of motivation for patients and their families on their journey to face shoulder-arm dystrophy (FSHD).
FSHD Vietnam aims to enhance the voice of the community and equip patients with proactive capacity through four core goals:
* Diagnostic Support
Connection support, helping patients perform FSHD genetic diagnostic tests in the US completely free of charge. This is a fundamental step to help patients accurately determine their condition to receive appropriate medical care.
* Spread Awareness
Providing in-depth knowledge, continuously updating official information on the state of scientific research, clinical context and the latest drug therapies in the world, helping society better understand this rare disease.
* Community Connection
Build a close network between domestic and international patients; At the same time, connect directly with scientists, experts and global FSHD ambassadors to open up opportunities to access advanced healthcare.
* Empathy & Understanding
Listen, share and gain strength to live together with patients to overcome psychological barriers.
We focus on improving mental health in addition to physical health, creating a safe space so no one feels left behind.
"Be a Researcher of Your Own Disease"
With the philosophy "The future is not where we are going, but where we are creating", FSHD Vietnam encourages each patient to proactively understand their body, equip themselves with knowledge to become their own companion and savior.
Since the genetic mechanism of the disease was discovered in 2010, world medicine has made giant strides. Now, the goal is not just to fund research but to jointly pave the way for successful clinical trials, promoting approval of effective therapies in the shortest possible time.
NO ONE HAS TO FACE FSHD ALONE!
If you or a loved one has a clinical diagnosis, suspects the disease, or wants to join the global FSHD community, FSHD Vietnam is always ready to support you in finding answers.
Due to an error in the genetic structure, the disease causes progressive muscle atrophy, greatly affecting the patient's mobility and quality of life.
Faced with those challenges, FSHD Vietnam was established in 2022, as the first non-profit, volunteer community group in Vietnam dedicated to this syndrome. We operate with the mission of being a bridge, fulcrum and source of motivation for patients and their families on their journey to face shoulder-arm dystrophy (FSHD).
FSHD Vietnam aims to enhance the voice of the community and equip patients with proactive capacity through four core goals:
* Diagnostic Support
Connection support, helping patients perform FSHD genetic diagnostic tests in the US completely free of charge. This is a fundamental step to help patients accurately determine their condition to receive appropriate medical care.
* Spread Awareness
Providing in-depth knowledge, continuously updating official information on the state of scientific research, clinical context and the latest drug therapies in the world, helping society better understand this rare disease.
* Community Connection
Build a close network between domestic and international patients; At the same time, connect directly with scientists, experts and global FSHD ambassadors to open up opportunities to access advanced healthcare.
* Empathy & Understanding
Listen, share and gain strength to live together with patients to overcome psychological barriers.
We focus on improving mental health in addition to physical health, creating a safe space so no one feels left behind.
"Be a Researcher of Your Own Disease"
With the philosophy "The future is not where we are going, but where we are creating", FSHD Vietnam encourages each patient to proactively understand their body, equip themselves with knowledge to become their own companion and savior.
Since the genetic mechanism of the disease was discovered in 2010, world medicine has made giant strides. Now, the goal is not just to fund research but to jointly pave the way for successful clinical trials, promoting approval of effective therapies in the shortest possible time.
NO ONE HAS TO FACE FSHD ALONE!
If you or a loved one has a clinical diagnosis, suspects the disease, or wants to join the global FSHD community, FSHD Vietnam is always ready to support you in finding answers.
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
