This web site is mostly oriented towards professionals. A more instructive description of the clinic can be found in Danish here.
In brief, assessment at our clinic requires a referral from a medical doctor. Self-referral is not possible. We cannot promise to answer patient-related questions from persons not connected with our clinic.
If you are seen at our clinic, you will get a clinical evaluation by a senior doctor, or a younger doctor supervised by a senior doctor. This clinical evaluation may lead to a series of investigations that could include sampling of muscle tissue, skin biopsy, neurophysiological evaluation, MR-scans of muscles, blood tests and genetic and biochemical investigations on blood or other tissue. If possible, treatment will be provided. You can also be offered to participate in scientific trials if you are interested. Your condition may also be monitored by a variety of muscle tests performed by our physiotherapists.
Below are some helpful links to useful patient organizations, data bases and neuromuscular disease pages.
http://muskelsvindfonden.dk/ The Danish Muscular Dystrophy Association (Muskelsvindsfonden)
http://www.rcfm.dk RehabiliteringsCenter for Muskelsvind
http://www.afm-telethon.com The French Muscular Dystrophy Association
http://www.mda.org The American Muscular Dystrophy Association
www.enmc.org European Neuromuscular Centre
www.treat-nmd.eu Translational Research in Europe – Assessment and Treatment of Neuromuscular Diseases
www.dmd.nl Leiden Muscular Dystrophy
http://neuromuscular.wustl.edu Neuromuscular Disease Center, Washington University, St. Louis, USA
http://www.med.upenn.edu/pmi Pennsylvania Muscle Institute
http://euromacregistry.eu/ European Registry for McArdle disease and other rare muscle glycogenoses
www.fkrp-registry.org Global registry for fukutin-related protein deficiencies