家長網站資源(神經肌肉疾病護理)

Family Internet Resource for Neuro-Muscular Disease

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顏肩肱型肌肉萎縮症 (FSHD)   Fascio-Scapulo-Humeral Muscular Dystrophy (FSHD)

進行性神經性腓骨肌萎縮症 (CMT)    亦稱 腓骨肌萎縮症，或 恰克-馬利-杜斯氏症    Charcot Marie Tooth  (CMT)

脊髓性肌肉萎縮症 (SMA)   Spinal Muscular Atrophy (SMA)  Drug Information for SMA

杜興氏肌肉萎縮症 (DMD) Duchenne Muscular Dystrophy (DMD)  Drug Information for DMD

先天性進行性肌肉萎縮症 (CMD)   Congenital Muscular Dystrophy (CMD)

貝克型肌肉萎縮症 (BMD) Becker Muscular Dystrophy (BMD)

肢帶型肌肉萎縮症 (LGMD)   Limb Girdle Muscular Dystrophy (LGMD)

Emery-Dreifuss-肌肉萎縮症 (EDMD)   Emery Dreifuss Muscular Dystrophy (EDMD)

膠原蛋白VI缺失所致肌肉萎縮症      Collagen VI Related Dystrophy

肌小管肌肉病變   Myotubular Myopathy

強直性肌肉失養症 (MD)  亦稱 肌強直性營養不良    Myotonic Dystrophy (MD)

肌肉萎縮症  Muscular Dystrophy

非進行性先天性肌肉病變 (CM) Congenital Myopathy (CM)

 

 

 

顏肩肱型肌肉萎縮症(FSHD)的資訊 Fascio-Scapulo-Humeral Muscular Dystrophy (FSHD) Online Information
中文網站
香港罕見疾病聯盟	針對顏肩肱型肌肉萎縮症患者的 物理治療（中文版）   顏肩肱型肌肉萎縮症（中文版）
肌营养不良症协会	肌营养不良症协会:面肩肱型肌营养不良症(FSHD)
English Websites 英文網站
FSHD Society (America)	Facioscapulohumeral Muscular Dystrophy Info - Treatment - FSHD Society
Loop Community  Muscular Dystrophy Association  (Australia)	Facioscapulohumeral Muscular Dystrophy (FSHD) - The Loop - Your Neuromuscular Resource Hub
Muscular Dystrophy Association  (America)	Facioscapulohumeral Muscular Dystrophy (FSH, FSHD) - Diseases | Muscular Dystrophy Association
National Organization for Rare Disorders (America)	Facioscapulohumeral Muscular Dystrophy - NORD (National Organization for Rare Disorders)
TREAT-Neuro-Muscular-Disease  (United Kingdom)	TREAT-NMD Organization’s Page about FSHD
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進行性神經性腓骨肌萎縮症(CMT)的資訊 （亦稱 腓骨肌萎縮症，或 恰克-馬利-杜斯氏症） Charcot Marie Tooth (CMT) Online Information
中文網站
香港罕見疾病聯盟	罕病小百科:進行性神經性腓骨萎縮症
中国国家罕见病注册系统	腓骨肌萎缩症
臺北榮民總醫院	遺傳性運動感覺神經病變 Charcot-Marie-Tooth Disease
台灣彰化基督教醫院	罕病介紹:進行性神經性腓骨萎縮症 ( Charcot Marie Tooth Disease, CMT )
English Websites 英文網站
Charcot Marie Tooth Association (America)	Home - Charcot–Marie–Tooth Association
Charcot Marie Tooth United Kingdom	CMT and You - Charcot-Marie-Tooth UK
Loop Community  Muscular Dystrophy Association (Australia)	Charcot-Marie-Tooth Disease (CMT) - The Loop - Your Neuromuscular Resource Hub
National Institute of Health (NIH) (America)	Charcot-Marie-Tooth disease    What is Charcot-Marie-Tooth disease
Foot Care Handbook from Charcot Marie Tooth Australia
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脊髓性肌肉萎縮症(SMA)的資訊 Spinal Muscular Atrophy (SMA) Online Information
中文網站
中国罕见病联盟	110、脊髓性肌萎缩症 - 罕见病诊疗指南 - 知识库 - 欢迎进入中国罕见病联盟
美儿SMA关爱中心	了解SMA - 美儿SMA关爱中心
脊髓肌肉萎縮症慈善基金	FSMA Hong Kong
香港肌健協會	脊髓肌肉萎縮症（SMA） – HKNMDA – 香港肌健協會
香港神經肌肉疾病學會	脊髓肌肉萎縮症 – 香港神經肌肉疾病學會
English Websites 英文網站
Family Guide from Treat-NMD (United Kingdom)
CURE Spinal Muscular Atrophy  (America)	Care Series Booklets for Spinal Muscular Atrophy (SMA) - Cure SMA
Spinal Muscular Atrophy United Kingdom	Spinal Muscular Atrophy UK - SMA Charity
Muscular Dystrophy Association  (America)	Spinal Muscular Atrophy (SMA) - Diseases | Muscular Dystrophy Association
Loop Community  Muscular Dystrophy Association (Australia)	Spinal Muscular Atrophy (SMA) - The Loop
DRUG INFORMATION for Spinal Muscular Atrophy
Spinal Muscular Atrophy UK (United Kingdom)	Drug Treatments Nusinersen (Spinraza) Risdiplam (Evrysdi) Zolgensma
Treat Spinal Muscular Atrophy (United Kingdom)	Nusinersen (Spinraza) Risdiplam (Evrysdi) Zolgensma
SMA-Europe	SMA Medicines Landscape Nusinersen (Spinraza) Risdiplam (Evrysdi) Zolgensma
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杜興氏肌肉萎縮症(DMD)的資訊 Duchenne Muscular Dystrophy (DMD) Online Information
中文網站
⚕️ 類固醇治療杜氏肌肉營養不良症之簡介
「英國Treat NMD機構」提供的家庭手冊    「英国Treat NMD机构」提供的家庭手册
香港罕見疾病聯盟	罕病小百科:杜興氏肌肉營養不良症
肌营养不良症协会	杜氏型肌营养不良症（DMD）
English Websites 英文網站
⚕️ Information about Steroid Use For Duchenne Muscular Dystrophy
Family Guide from Treat-NMD (United Kingdom)
Action Duchenne  (United Kingdom)	Guides and information - Action Duchenne
Parent Project  Muscular Dystrophy (America)	What is Duchenne muscular dystrophy? - Parent Project MD
Loop Community  Muscular Dystrophy Association (Australia)	Duchenne Muscular Dystrophy (DMD) - The Loop - Your Neuromuscular Resource Hub
Muscular Dystrophy Association (America)	Duchenne Muscular Dystrophy (DMD)   (MDA America)
Muscular Dystrophy Association  (New Zealand)	Duchenne Muscular Dystrophy (DMD)   (MDA New Zealand)
DRUG INFORMATION for Duchenne Muscular Dystrophy
Parent Project Muscular Dystrophy (America)	Duchenne Drug Development Pipeline STEROID General Information Deflazacort (EMFLAZA) Casimersen (AMONDYS 45) Eteplirsen (EXONDYS 51) Viltolarsen (VILTEPSO) Golodirsen (VYONDYS 53)
Muscular Dystrophy Association (America)	Overview of Research Steroid Article Deflazacort (Enflaza) : FDA's approval Golodirsen (Vyondys 53) : FDA's approval Viltolarsen (Vitepso) : FDA's approval Eteplirsen (Exondys 51) : FAQ
Cure Duchenne (America)	Steroid Information Steroid Video
European Medicines Agency	Ataluren (Translarna)
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先天性進行性肌肉萎縮症(CMD)的資訊 Congenital Muscular Dystrophy (CMD) Online Information
中文網站
肌营养不良症协会	先天性肌营养不良（CMD）
English Websites 英文網站
Family Guide from Treat-NMD (United Kingdom)
Cure Congenital Muscular Dystrophy (CMD)	Cure CMD | Congenital Muscular Dystrophy Research
Muscular Dystrophy Australia	Congenital MD | MD Australia
Loop Community  Muscular Dystrophy Association (Australia)	Congenital Muscular Dystrophy (CMD) - The Loop - Your Neuromuscular Resource Hub
Muscular Dystrophy Association  (New Zealand)	Congenital Muscular Dystrophies  (MDA New Zealand)
Muscular Dystrophy Association (America)	Congenital Muscular Dystrophy (CMD)   (MDA America)
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貝克型肌肉萎縮症(BMD)的資訊 Becker Muscular Dystrophy (BMD) Online Information
English Websites 英文網站
Loop Community  Muscular Dystrophy Association (Australia)	Becker Muscular Dystrophy (BMD) - The Loop - Your Neuromuscular Resource Hub
Muscular Dystrophy Association  (America)	Becker Muscular Dystrophy (BMD)  (MDA America)
Muscular Dystrophy Association (New Zealand)	Becker Muscular Dystrophy (BMD)  (MDA New Zealand)
National Organization for Rare Disorders (America)	Muscular Dystrophy, Becker - NORD (National Organization for Rare Disorders)
TREAT-Neuro-Muscular-Disease  (United Kingdom)	Becker Muscular Dystrophy - TREAT-NMD
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肢帶型肌肉萎縮症(LGMD)的資訊 Limb Girdle Muscular Dystrophy (LGMD) Online Information
中文網站
肌营养不良症协会	肢带型肌营养不良症(LGMD)
高雄醫學大學附設中和紀念醫院	神經肌肉疾病介紹：肢帶型肌肉失養症
台灣彰化基督教醫院	罕病介紹
English Websites 英文網站
Loop Community  Muscular Dystrophy Association (Australia)	Limb Girdle Muscular Dystrophy (LGMD) - The Loop - Your Neuromuscular Resource Hub
Muscular Dystrophy Association  (New Zealand)	What is Limb Girdle Muscular Dystrophy (LGMD)?   (MDA New Zealand)
National Organization for Rare Disorders (America)	Limb-Girdle Muscular Dystrophies - NORD (National Organization for Rare Disorders)
TREAT-Neuro-Muscular-Disease (United Kingdom)	Data & Information : Limb Girdle Muscular Dystrophy (LGMD)
National Institute of Health (NIH) (America)	limb-girdle-muscular-dystrophy
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Emery-Dreifuss-肌肉萎縮症(EDMD)的資訊 Emery Dreifuss Muscular Dystrophy (EDMD)  Online Information
English Websites 英文網站
Muscular Dystrophy Association  (MDA America)	Emery-Dreifuss Muscular Dystrophy (EDMD)  (America)
Muscular Dystrophy Association  (New Zealand)	Emery-Dreifuss Muscular Dystrophy  (MDA New Zealand)
National Library of Medicine  (America)	Emery-Dreifuss muscular dystrophy
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膠原蛋白VI缺失所致肌肉萎縮症的資訊 Collagen VI Related Dystrophy Online Information
English Websites 英文網站
Noelia Foundation (Spain)	Inicio - Fundación Noelia
Medline Plus  (America)	Collagen VI-related dystrophy: MedlinePlus Genetics
National Organization for Rare Diseases (America)	Collagen Type VI-Related Disorders - National Organization for Rare Disorders
National Library of Medicine,  National Centre for Biotechnology Information (America)	Collagen VI-Related Dystrophies - PubMed
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肌小管肌肉病變的資訊 Myotubular Myopathy Online Information
English Websites 英文網站
Family Guide from Treat-NMD (United Kingdom)
Joshua Frase Foundation (America)	Life with children living with myotubular or centronuclear myopathy
Myotubular Trust Organization  (United Kingdom)	Myotubular Trust, Centronuclear Myopathy, TITIN, RYR1
TREAT-Neuro-Muscular-Disease (United Kingdom)	Myotubular and Centronuclear Myopathies (MTM-CNM)
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強直性肌肉失養症(MD)的資訊 （亦稱 肌強直性營養不良) Myotonic Dystrophy (MD) Online Information
中文網站
香港神經肌肉疾病學會	肌肉強直症 - 香港神經肌肉疾病學會 (hksnmd.org)
中国国家罕见病注册系统	疾病知识_中国国家罕见病注册系统 (nrdrs.org.cn)
財團法人罕見疾病基金會	罕病分類與介紹
English Websites 英文網站
Myotonic Dystrophy Foundation (America)	Homepage Publications Digital Academy (Many Videos)
TREAT-Neuro-Muscular-Disease   (United Kingdom)	TREAT-NMD Organization’s Page about MD
Myotonic Dystrophy Support Group (United Kingdom)	Homepage Leaflets
Muscular Dystrophy Association  (America)	Myotonic Dystrophy (DM) - Diseases | Muscular Dystrophy Association (mda.org)
National Institue of Health  (America)	Myotonic dystrophy: MedlinePlus Genetics About Myotonic Dystrophy
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肌肉萎縮症的資訊 Muscular Dystrophy Online Information
中文網站
肌营养不良症协会	协会主页
English Websites 英文網站
Centres for Disease Control and Prevention (America)	Learn about Muscular Dystrophy | CDC
CURE- Congenital Muscular Dystrophy  (America)	Cure CMD | Congenital Muscular Dystrophy Research
Medline Plus  (America)	Muscular Dystrophy | MD | MedlinePlus
Muscular Dystrophy Association  (America)	Find a Neuromuscular Disease | Muscular Dystrophy Association
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非進行性先天性肌肉病變(CM)的資訊 Congenital Myopathy (CM) Online Information
English Websites 英文網站
Cure-CMD	The Care of Congenital Myopathy: A Guide for Families
Joshua Frase Foundation (America)	Resources and links for caring for children with congenital myopathy

 

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