Living with Muscular Dystrophy: Additional Related Resources
Below are links that you may find helpful in learning more about muscular dystrophy.
Muscular Dystrophy Organizations
The Muscular Dystrophy Campaign is the only UK charity focussing on all muscular dystrophies and allied disorders.
The Muscular Dystrophy Association provides information and support services to individuals, families, and carers affected by neuromuscular disorders.
The Muscular Dystrophy Associiation is a national voluntary health agency dedicated to conquering more than 40 neuromuscular diseases that affect a million Americans of all ages.
TREAT-NMD is a network that brings together people with neuromuscular diseases and specialists (scientists, healthcare professionals and pharmaceutical companies) working on treatments for these conditions. The website contains information about standards of care for Spinal Muscular Atrophy and Duchenne muscular dystrophy, as well as other useful references and information.
The Myotonic Dystrophy Foundation (MDF) is a patient advocacy group dedicated to leading and mobilizing resources toward effective management, treatment, and a cure for myotonic dystrophy, a common form of muscular dystrophy.
Disorder Organizations
The aim of this website is to present understandable and useful material
and to make it as widely accessible as possible.
Athrogryposis
The following sites offer online support for people with arthrogryposis.
The CMT Association in Australia (CMTAA) began as a Support Group in 1988, and was incorporated in 1990 as a registered charity. It aims are to:
- Distribute information related to the welfare of people with CMT;
- Promote contact with others who have CMT;
- Advocate for the development of facilities and services for people with CMT;
- Support CMT research.
The CMTA is a nonprofit organization founded in 1983 whose goals are patient support, public education, promotion of research and ultimately the treatment and cure of CMT.
Working to support those who are affected by Charcot-Marie-Tooth Disease, also known as Hereditary Motor and Sensory Neuropathy or Peroneal Muscular Atrophy
DuchenneConnect has been created to serve as a central hub linking the resources and needs of the Duchenne/Becker muscular dystrophy community: young men with Duchenne; their families and caregivers; and the provider community: clinical care providers, policymakers, industry professionals and the medical research fields. A key service offered on this site is a patient registry.
The web site of Families of Spinal Muscular Atrophy - a comprehensive, on-line information and resource center.
The Facioscapulohumeral Muscular Dystrophy Society (FSH Society) is a non-profit tax-exempt U.S. corporation organized in 1991 to fund, encourage and promote scientific and clinical research on Facioscapulohumeral Muscular Dystrophy (FSHD)
This website provides another forum for parents to share our unique experiences and kowledge of how we've learned to cope with ataxia in our family.
Our focus is on providing information and support for patients, family members, and healthcare professionals.
The Hereditary Neuropathy Foundation contains detailed information about Charcot-Marie-Tooth disease (CMT), and offers online forums for support.
These pages are devoted to information about Myotonic Dystrophy (DM1 and DM2) and Congenital Myotonic Dystrophy (CMD), both forms of muscular dystrophy.
The IPA is a federation of Pompe disease patient's groups world-wide. It seeks to coordinate activities and share experience and knowledge between different groups, amongst other objectives.
This organization provides information about malignant hyperthermia and supports a patient registry and online message board for people who are affected by this condition.
The Myasthenia Gravis Foundation of America (MGFA) is the only national volunteer health agency dedicated solely to the fight against myasthenia gravis. MGFA has over 30 Chapters around the United States serving patients and their families and caregivers through support groups and programs.
An informal group of individuals who have Myasthenia Gravis who learn much from each other on how to live through the ups and downs of MG.
The Myasthenia Gravis Association (MGA) has as its objective the promotion of the welfare of sufferers from Mysathenia Gravis in the United Kingdom and the Republic of Ireland.
The mission of The Myositis Association is to find a cure for inflammatory and other related myopathies, while serving those affected by these diseases.
Dedicated to improving the lives of persons affected by ataxia through support education and resarch.
The Canadian Association of Pompe was setup to help persons in Canada and elsewhere become familiar with Pompe disease, also for support of those persons with Pompe.
This Web site offers the Pompe community comprehensive information on the disease, as well as resources and support to help manage the challenges it may bring.
For Parents and Caregivers
This guide has been carefully and painstakingly prepared to offer you the most comprehensive, accurate and readable compendium on Duchenne muscular dystrophy. The index will permit ready access to desired information.
Parent Project Muscular Dystrophy’s mission is to improve the treatment, quality of life and long-term outlook for all individuals affected by Duchenne muscular dystrophy (DMD) through research, advocacy, education and compassion.
Clinical Trials
This site features information for both researchers and patients about clinical trials, including a searchable database and answers to frequently asked questions.
This is a registry of new and ongoing clinical trials conducted in the United States and internationally. ClinicalTrials.gov gives you information about a trial's purpose, who may participate, locations, and phone numbers for more details.
Ventilation Support and Information
This site contains resources, tools and information for people using ventilators. The “Take Charge, Not Changes” kit, developed specifically for people with neuromuscular conditions, includes emergency checklist and other documents that can be downloaded and customized to reflect your own needs and situation.
This Center, based at the University Hospital, Newark, New Jersey consists of physicians and other health care professionals dedicated to the care of patients with neuromuscular weakness and respiratory impairment from any cause. Led by Dr. John Bach, the Center provides real hope for patients who are thought to be without any options through conventional management.
The Centre’s Institute for Rehabilitation Research and Development website contains online education modules for ventilation and respiratory care, including protocols for specifically for neuromuscular disorders.
West Park Heath Care Centre provides information and online e-learning modules for individuals and their caregivers about long term ventilation.
Other Links
Working with practitioners, organizations, and communities to improve the health and quality of life for all people through physical activity
A community-based resource developed to support youth between the ages of 15 and 24 with physical disabilities
To help you get the most out of your health care visits, see tips provided by Health Canada's brochure “It Helps to Talk.”
The Office for Disability Issues is the focal point within the Government of Canada for key partners working to promote the full participation of Canadians with disabilities in learning, work and community life.
A searchable directory compiled for medical students, residents, and other health professionals
My Health Passport is a customized, wallet-size card that gives you instant access to your medical information. Having this information readily accessible is important for when you go to a new doctor or in case of emergency.
Individuals with disabilities who are not in the labour force are faced with the misperception that they are either unable or unwilling to work. Failure to recognize and address these myths and negative stereotypes results in discrimination and the exclusion of individuals with disabilities from the workplace despite their willingness and ability to actively participate in the labour force.
ORPHANET aims to improve management and treatment of genetic, auto-immune or infectious rare diseases, rare cancers, or not yet classified rare diseases.
ORPHANET is a database dedicated to information on rare diseases and orphan drugs. Access to this database is free of charge.
ORPHANET offers services adapted to the needs of patients and their families, health professionals and researchers, support groups and industry.
Professional Associations
To learn more about some of the health-care professions described, contact the professional associations listed below:
The Canadian Association of Occupational Therapists provides services, products, events and networking opportunities to assist occupational therapists achieve excellence in their professional practice. In addition CAOT provides national leadership to actively develop and promote the client-centred profession of occupational therapy in Canada and internationally.
Phone: (613) 523-CAOT(2268) or (800) 434-CAOT(2268)
Fax: (613) 523-2552
CAPPE/ACPEP is a national multifaith organization which is committed to the professional education, certification and support of people involved in pastoral care and pastoral counselling. We provide educational programs for lay persons and clergy who are preparing to become chaplains, pastoral counsellors, ministers, priests, or community based pastoral care workers. We also provide education and certification for supervisors and specialists.
Phone: (902) 820-3085 (Halifax) or (866) 442-2773
Fax: (902) 820-3087
E-mail: office
As a federation of nine provincial and one territorial social work organizations, the Canadian Association of Social Workers (CASW) provides a national leadership role in strengthening and advancing the social work profession in Canada.
Phone: (613) 729-6668
Fax: (613) 729-9608
E-mail: casw
The Canadian Association of Speech-Language Pathologist and Audiologists is the national voice of more than 5,000 professionals. A not-for-profit association, CASLPA supports the professional needs of its members, champions the interests of those who require speech, language, and hearing services and promotes awareness of how speech-language pathologists, audiologists and supportive personnel contribute to the well being of Canadians living with communication disorders.
Phone: (800) 259-8519
Fax: (613) 567-2859
E-mail: caslpa
The Canadian Physiotherapy Association (CPA) is the voluntary organization representing 10,000 members and students across the country. CPA provides leadership and direction to the physiotherapy profession, fosters excellence in practice, education and research and promotes high standards of health in Canada. We invite you to learn more about the many ways physiotherapy is improving the health and mobility of Canadians.
Phone: (416) 932-1888 or 1-800-387-8679
Fax: (416) 932-9708
E-mail: information
Leadership through Advocacy, Service and Unity for Respiratory Therapists in Canada.
Phone: (613) 731-3164 or (800) 67-3422
Fax: (613) 521-4314
E-mail: csrt
The Canadian Foundation for Dietetic Research (CFDR) was created by Dietitians of Canada (DC), the professional association for dietitians, and incorporated in 1991 as a charitable foundation. By providing grants to support research by Dietitians in the context of their practice, CFDR is in a unique position to help improve the nutritional health of all Canadians. The evidence resulting from this research allows Dietitians and other health professionals to provide science-based guidance and intervention in the prevention of chronic disease and pursuit of optimal health.
Phone: (416) 596-0857
Fax: (416) 596-0603
