Phillippa Farrant: "You feel as though you're battling the system the whole time"
NHS care for patients with muscle-wasting disorders is often "inadequate and not acceptable", MPs and peers say.
The All-Party Parliamentary Group on Muscular Dystrophy inquiry found huge variations in life expectancy.
People with the disorders also often faced long waits for wheelchairs and having to pay for physiotherapy, the report said.
The government said it expected the local NHS to provide services to meet people's needs.
There are more than 60 different types of muscular dystrophy and related neuromuscular conditions, affecting some 60,000 people across the country.
They cause muscles to waste and weaken, making it hard to do even the most simple tasks and many of those affected do not make it to adulthood.
The diseases cause muscle weakness and wasting
The cross-party group of MPs and peers, which was supported by the Muscular Dystrophy Campaign in its inquiry, gathered evidence from doctors, patients and health managers.
It found there was a "postcode lottery" when it came to life expectancy, which politicians said would have been a national scandal if it had been related to cancer.
In the north east, sufferers can expect to live to 30 whereas elsewhere those with the condition struggled to reach 18.
The report also accused the NHS of relying on charities to provide support to families affected.
Dave Anderson, the MP who led the inquiry, lost a brother and sister to the disease. He said: "It is very clear that the standard of care provided to these patients by the NHS is often inadequate and not acceptable."
Cross-bench peer Lord Walton, a founder of the Muscular Dystrophy Campaign, was one of the key members of the group and he said he was "appalled" by much of the evidence heard.
The report concluded by calling for official guidelines to be given to trusts to ensure high standards of care as well as a review of skills in the health workforce.
I hope that the report will help to put pressure on the NHS to start providing the standard of care that these patients so dearly need and deserve
Philip Butcher, Muscular Dystrophy Campaign
It also recommended that each of the 10 health regions in England and Scotland, Wales and Northern Ireland should appoint a specialist to oversee services.
Phillippa Farrant has a seventeen-year-old son with a rare muscle-wasting condition and she said getting treatment on the NHS had been a struggle.
"You just feel as though you are battling the system the whole time and that your whole life is based around hospital appointments," she said.
"We have got something fairly local but in other parts of the country they are travelling hundreds and hundreds of miles to get to the specialist places, which is completely wrong."
'Meeting community needs'
Philip Butcher, chief executive of the Muscular Dystrophy Campaign, agreed that improvements were needed.
"I hope that the report will help to put pressure on the NHS to start providing the standard of care that these patients so dearly need and deserve."
A spokesman for England's Department of Health said it recognised the importance of providing high-quality, personalised care for people with long term conditions such as muscular dystrophy.
He added: "We expect the NHS to commission services to meet the needs of its local communities.
"However, muscular dystrophies are to be included in an updated list of specialised services to help local NHS organisations plan services."
A Welsh Assembly government spokeswoman said it was already taking action to improve muscular dystrophy services.
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