People attending the NeuroMuscular Centre have numerous, but typically rare conditions. There are other focused support groups that offer something different and complimentary to the NMC. One such group is the Association for Glycogen Storage Diseases UK.
The group was formed thirty years ago in 1986 by two mothers who both had a child with a rare Glycogen Storage Disease (GSD) The group has grown over the years and has funded early research in to treatments and therapies. The Association is run, informed and supported by its members and they aim to provide a warm welcome to anyone diagnosed with a GSD including McArdles and Pompe . As with many neuromuscular conditions, the chances are they have had a long and difficult journey to diagnosis. The group has a Pompe Support Team, a group of people with Pompe who are willing to provide a listening ear or talk about common experiences. For more information visit www.agsd.org.uk.
Wins
Different conditions, different backgrounds and different experiences.
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