Muscular dystrophy organization Sweden NHR

NHR SWEDEN

Richard Weston was fortunate enough to meet with the NHR in Sweden in August of 2001.  Sweden is an interesting country with 9 million people. They speak English in most cases as well as Swedish. The country is very modern and well maintained. It was a pleasure visiting with the NHR. Here is some information gathered from that trip.

Formed in 1957 as an organization for MS and now has 120 local branches. Most of the work of the organization is done at the local branch level. The organization takes care of many neurological problems including MS, stroke, MD, Parkinson’s, etc. They do not diagnosis members and they have about 15,000 members but it unclear how many have a specific muscle disease.

They have a couple of goals:
Take care of the general disabled issues (accessibility, general issues)
Take care of specific areas and they have 14 advisory boards for this
Maintain a foundation for research with a $300,000 budget
Organize two fairs each year   

        One for Technical Aids for the Disabled
        One for transportation and movement of the disabled
NHR receives about 25% of its budget from the government
Many aids and wheelchairs are paid for by the government
They provide education to community professionals on transportation and movement
They have a mocked up house with ideas for the disabled. The house is actually set up with appliances and furniture that fits the disabled.

The NHR helps with general information on Myotonic Dystrophy but does not have a specific program to assist them.  The address is NHR, Kungsgatan 32, Stockholm Sweden.

I meet with Brigitta Netterlund of the NHR who wrote some very interesting information about MD. She is an occupational therapist from the university.

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