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Oculopharyngeal muscular dystrophy support group

Join our informal support group for people living with, and affected by, oculopharyngeal muscular dystrophy (OPMD).

Register today

Meeting annually, usually on Zoom, the group is a safe space where people can connect with others, share experiences of living with OPMD, and offer advice and support.

Bryan Gould, a longstanding volunteer who lives with OPMD, founded and chairs the group. OPMD is one of the rarest muscle wasting conditions, and before the group began Bryan had never met anyone apart from his direct family with the same condition.

For this meeting, we’ll begin by providing attendees with an update about the support we offer. We’ll then be joined for an informal Q&A with a neuromuscular occupational therapist and a neuromuscular speech and language therapist. There will also be an opportunity for the group to chat with each other.

Details
Date Monday 23 September 2024 Time 1:00 pm Register today

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