The Wales government in the UK has taken up a systematic review of the facilities available for treatment of rare muscle conditions.
The move comes in the wake of reports that some patients with muscular dystrophy in Wales are being forced to travel hundreds of miles to England for specialist treatment.
There are few services for muscular dystrophy in place in Wales and even these depend on a handful of clinicians - making them vulnerable if the health professionals move jobs or retire.
And the Muscular Dystrophy Campaign's own research - based on answers to Freedom of Information requests - reveals that three out of four local health boards do not support a muscle clinic for either adult or child patients, Western Mail reports.
The Muscular Dystrophy Campaign and Genetic Interest Group are calling on the Welsh Assembly Government to ensure all patients with a muscle disease have access to the expertise needed to treat their conditions.
More than 3,000 people in Wales are affected by a neuromuscular condition, which weaken or waste the muscles.
Dr Louise Hartley, a Cardiff-based consultant neurologist, said, "Specialist team care is essential and yet it is restricted for many muscle disease patients in Wales. Too often specialist care is vulnerable and heavily dependent on a few doctors, nurses and physiotherapists, rather than embedded in a properly resourced, long-term service.
"The life expectancy and quality of life for boys with the fatal condition Duchenne muscular dystrophy is improving throughout the world because of proper multi-disciplinary care. Children in Wales must not be left behind."
Steve Higginson, 49, from Colwyn Bay, has struggled to find appropriate care for his Becker muscular dystrophy for many years. He has been making a weekly two-hour round trip to the Neuromuscular Centre in Winsford, Cheshire, for the past 10 years for specialist physiotherapy.
Higginson said, "I found many parts of Wales to be a desert for the treatment of patients with conditions like mine. I've been going to Winsford for 10 years and if I hadn't my condition would be much, much worse because nowhere in Wales provides the same service.
"Expecting disabled people and their families to travel long distances just to gain access to the clinical care they need is shocking."
A group of clinicians, patients and campaigners last week presented a report to First Minister Rhodri Morgan outlining how the NHS is failing them.
The report, Building on the Foundations: The Need for a Specialist Neuromuscular Service Across Wales, also reveals that Welsh NHS commissioners will not consistently fund diagnostic tests for Welsh patients at recognised specialist centres in England.
It claims this results in some patients receiving "inadequate" diagnosis compared to the rest of the UK.
And the report said one LHB is unable to commission services at a nearby specialist centre in Oswestry because of "funding constraints".
Philip Butcher, chief executive of the Muscular Dystrophy Campaign, said, "People with rare illnesses are living longer thanks to medical advances and yet NHS services in Wales are failing to meet this demand.
"It is essential that Health Commission Wales recognises the specialist nature of the care needed by patients with neuromuscular condition and ensure that such services are available to all patients in Wales.
"We are calling on HCW to undertake an independent review of services as a matter of urgency."
A spokesman for the Welsh Assembly Government said, "We welcome the work by the Muscular Dystrophy Campaign on how care can be improved for people living with the neuromuscular conditions.
"The Welsh Assembly Government will carefully consider the recommendations and the Health Minister Edwina Hart will feed this report into the ongoing independent review of adult neurosciences services in Wales, which includes neuromuscular services."