Care for Limb-Girdle Muscular Dystrophy

Limb-Girdle Muscular Dystrophy Guide for Families, Caregivers and HCPs 

To support individuals and families affected by LGMD, TREAT-NMD and Sarepta Therapeutics partnered to create this plain-language LGMD Family Guide. It is designed for patients, families, and non-specialist clinicians, with contributions from 9 international clinician teams—each including a key opinion leader (KOL) and a patient advocacy representative.

The guide focuses initially on general LGMD information and 7 specific subtypes (1D/D, 2A/R1, 2B/R2, 2D/R3,2E/ R4, 2I/R9, and 2L/R12), with the long-term goal of expanding to cover all subtypes and translating into as many languages as possible.

If you are able to help with translating a family guide into your language please get in touch: info@treat-nmd.com 

This guide aims to be globally accessible and relevant, with chapters addressing a broad range of topics—from swallowing and psychosocial support to emerging treatments—offering practical information for navigating life with LGMD.