Patient Focused Reports
Voice of the Patient Report
The Voice of the Patient (VOP) Report provides a detailed summary of the 2022 LGMD EL-PFDD meeting.
Limb-Girdle Muscular Dystrophy Guide for Families, Caregivers and HCPs
This plain-language LGMD Family Guide 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.
Standards of Diagnosis and Care for the Sarcoglycanopathies
Standards of Diagnosis and Care for the Sarcoglycanopathies
This is a summary of the 282nd ENMC International Workshop on the Standards of diagnosis and care for the Sarcoglycanopathies. This workshop was held on November 8-10, 2024, in Amsterdam, Netherlands. The formal document will be published at a later date. Details on the release will be shared in the future.
Watch the Replay
2025 International LGMD Conference
This year's International LGMD Conference, held July 18 - July 20, 2025, in Orlando, FL, was a HUGE SUCCESS! With 530+ in-person attendees from over 27 countries, it was a weekend full of great insights, togetherness, and continual hope.
Video replay coming soon!
2024 LGMD Scientific Workshop
On February 8, 2024, The Speak Foundation convened several academic medical experts, senior leaders from the U.S. Food and Drug Administration (FDA) Center for Drug Evaluation and Research (CDER) and Center for Biologics Evaluation and Research (CBER), highly experienced drug developers, and other specialists that all sought to answer important questions on how to drive momentum to fulfill the unmet, yet critical need of the patient community to accelerate drug development for LGMDs. The meeting focused on six LGMD subtypes: 2A/R1, 2B/R2, 2C/R5, 2D/R3, 2E/R4, and 2I/R9.
The LGMD Scientific Workshop provided scientific and medical experts, regulators, patients, and drug development stakeholders the opportunity to explore innovative drug development approaches and clinical trial designs targeting the causal pathways and appropriate clinical and surrogate endpoints tailored for each subtype.
2024 LGMD Scientific Workshop
On February 8, 2024, The Speak Foundation convened several academic medical experts, senior leaders from the U.S. Food and Drug Administration (FDA) Center for Drug Evaluation and Research (CDER) and Center for Biologics Evaluation and Research (CBER), highly experienced drug developers, and other specialists that all sought to answer important questions on how to drive momentum to fulfill the unmet, yet critical need of the patient community to accelerate drug development for LGMDs. The meeting focused on six LGMD subtypes: 2A/R1, 2B/R2, 2C/R5, 2D/R3, 2E/R4, and 2I/R9.
The LGMD Scientific Workshop provided scientific and medical experts, regulators, patients, and drug development stakeholders the opportunity to explore innovative drug development approaches and clinical trial designs targeting the causal pathways and appropriate clinical and surrogate endpoints tailored for each subtype.
2023 International LGMD Conference
The International LGMD Conference is an informative event where LGMD patients and caregivers can hear sessions about updates on the latest research and new information from the pharmaceutical industry by the world's leading biotechs. Grasp LGMD researchers, also the world's best on LGMD, were at this event to give firsthand information on new clinical trials.
The LGMD2D Foundation was a proud Advocacy Sponsor of the
2023 conference.
2022 LGMD EL-PFDD
The first externally led patient-focused drug development (EL-PFDD) meeting for LGMD was held on September 23,2022. This monumental event gave individuals diagnosed with limb-girdle muscular dystrophy types 2A, 2C, 2D, 2E, 2F, and 2I an opportunity to share with the FDA and other stakeholders about the experiences and challenges of living with LGMD.
LGMD News Magazine
LGMD News - Summer 2025 Issue (Volume 5, Issue 3)
The Speak Foundation's magazine created just for the LGMD community. Subscribing is free and confidential.
Help us help LGMD2D patients!
Join us this fall for two fantastic events to support patients with LGMD2D/R3. It’s a great chance to come together, have fun, and make a real difference! All the proceeds will go toward raising LGMD2D awareness, advocating for those affected, and developing new treatments. Be part of this important cause with us!