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AdvocacyRSSWednesday, April 22, 2026 · 2 days ago

Patient-led group launches network of clinics to improve LGMD care

WHY IT MATTERS

This coordinated clinic network could help LGMD patients access specialized care in one place and speed up the development of new treatments by making it easier for researchers to find and study patients.

A patient-led nonprofit called The Speak Foundation has created a network of specialized clinics called LGMD Centers of Excellence to help people with limb-girdle muscular dystrophy (LGMD), a rare muscle disease. This new network aims to solve a major problem: patients with LGMD have had trouble getting consistent care and doctors have struggled to develop new treatments because the patient population is very small and spread out.

Patient-led nonprofit The Speak Foundation has announced the launch of the LGMD Centers of Excellence, a novel alliance of clinics dedicated to improving care for people affected by limb-girdle muscular dystrophy (LGMD). “LGMD has historically faced significant barriers to therapeutic development due to fragmented care infrastructure and extremely small patient populations,” Kat Bryant Knudson, founder […] The post Patient-led group launches network of clinics to improve LGMD care appeared

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lgmdmuscular dystrophypatient-led initiativecare infrastructureclinical network

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