What are Duchenne and Becker muscular dystrophy?
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Official DMD and rare-disease organizations in China and around the world. Tap any card to open that organization's own website.
北京至爱杜氏肌营养不良关爱中心
China · china-dmd.org.cn
中国罕见病联盟 CHARD
China · chard.org.cn
蔻德罕见病中心 CORD
China · cord.org.cn
台湾肌肉萎缩症病友协会
Taiwan · mda.org.tw
香港肌健协会 HKNMDA
Hong Kong · hknmda.org.hk
World Duchenne Organization
Global · worldduchenne.org
Parent Project Muscular Dystrophy
United States · parentprojectmd.org
Duchenne UK
United Kingdom · duchenneuk.org
Action Duchenne
United Kingdom · actionduchenne.org
Duchenne Parent Project España
Spain · duchenne-spain.org
Duchenne Australia
Australia · duchenneaustralia.org
CureDuchenne
United States · cureduchenne.org
Jett Foundation
United States · jettfoundation.org
Parent Project Italia
Italy · parentproject.it
Duchenne Parent Project Netherlands
Netherlands · duchenne.nl
TREAT-NMD
International · treat-nmd.org
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New Drugs and Gene Therapy: Could One Help Your Child?
The short answer: as of today, no drug cures Duchenne muscular dystrophy (DMD). What the new drugs can do is slow things down, or improve some functions a little — and every one of them has…
Why Getting a Diagnosis Takes So Long, and What Helps
The short answer: DMD is confirmed by genetic testing, not by "let's wait and watch." Walking late, falling often, struggling on stairs and enlarged calves, together with a CK dozens of…
Choosing a Steroid: Which One Is Right for Your Son?
The short answer: steroids are still the only treatment that slows DMD down for every child, and that is not in dispute. Guidelines advise starting at age 4–5, before motor ability reaches…
What Treatment Really Costs and How Families Manage to Pay
The short answer: DMD is expensive not because of any single injection, but because it is a bill for life. Research by the Chinese Organization for Rare Disorders (CORD) puts it plainly.…
Daily Care at Home: Rehab, Wheelchairs, Breathing and Heart Checks
The short answer: while there is still no cure, good standard care is a treatment in itself. The international DMD care consensus published in The Lancet Neurology in 2018, together with…
School Life: Helping Your Child Learn, Play and Fit In
The short answer: yes, he can go to school — and he should stay in an ordinary school, in an ordinary class. School is not only about lessons for a child with DMD. It is his friendships,…
Food and Weight: What Should Your Child Eat Every Day?
The short answer: weight in DMD follows a curve that goes up first, then down — and both ends need guarding against. In a 2024 study of 93 boys aged 6–12, 41.8% had an abnormal nutritional…
Bones, Growth and Puberty Problems Parents Worry About the Most
The short answer: bones are the part of DMD care most often left until something goes wrong — and a fracture is one of the most dangerous turning points in the whole course of the disease.…
Looking After Your Child's Feelings and Your Own Mental Health
The short answer: mental health problems in DMD families are not a few people being fragile. They are the norm for most families — most of whom have never asked for help. A University of…
Growing Up With DMD: Planning Ahead for Adult Life Together
The short answer: this question is hard because it is genuinely new. With better care, more and more children with DMD are living into adulthood, and parents' worry has shifted from "how…
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