LGMD patient organizations

Below you will find a list of all patient organizations and support groups that cover limb girdle muscular dystrophy (LGMD). Virtually all of the organizations below deal with all types of neuromuscular disease, including the LGMDs: there are very few organizations that cover exclusively LGMD.

B Baggins B Baggins

B. Baggins is a registered charity that offers psychological and physiological support to individuals with Limb-Girdle Muscular (LGMD).

The B. Baggins Foundation raises funds to provide grants for equipment and research. We are the only registered charity within the UK who specifically supports this rare and currently incurable group of diseases.

They are looking to increase our public support in order to raise awareness and funds, which will enable the charity to continue its vital works.

More Info
Email
Website www.bbaggins.org

 

Coalition to Cure Calpain 3 Coalition to Cure Calpain 3

United States of America

The coalition are committed to funding research efforts focussed on understanding the biology of and finding a cure for limb girdle muscular dystrophy type 2A - LGMD2A - which results from a deficency of the calpain 3 enzyme.

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Website www.curecalpain3.org

 

Gruppo Familiari Beta-Sarcoglicanopatie Onlus (GFB ONLUS) Gruppo Familiari Beta-Sarcoglicanopatie Onlus (GFB ONLUS)

Italy

The Family Group of Beta-sarcoglycanopathy (GFB ONLUS) is a group of families with people with beta-sarcoglycanopathy and other Limb-girdle muscular dystrophies. THE GFB ONLUS is a non-profit organization and it was created to finance research projects aimed at treating Limb Girdle Muscular Dystrophy type 2E (LGMD2E).

Formed in February 2013 in Italy, since 2012, the family of GFB ONLUS has raised more than $750.000 for research into LGMD2E. Among other initiatives, the association is currently funding a gene therapy project about LGMD2E.

More Info
Email
Call 00393497244391 Website www.lgmd2e.org

 

Jain Foundation Jain Foundation

United States of America

The Jain Foundation is a non-profit foundation whose mission is to cure muscular dystrophies caused by dysferlin protein deficiency, which includes the clinical presentations Limb-girdle muscular dystrophy type 2B (LGMD2B) and Miyoshi muscular dystrophy 1 (MMD1). The foundation is privately funded and does not solicit funding from patients or other sources.

The Foundation's focused strategy includes funding and actively monitoring the progress of scientific research projects in key pathways towards a cure, providing financial and logistical support to promising drug candidates to accelerate them to clinical trials, funding clinical trials and studies, encouraging collaboration among scientists, and educating LGMD2B/Miyoshi patients about their disease and helping them with their diagnosis (e.g., funding dysferlin protein and gene mutational analysis).

More Info
Website jain-foundation.org

 

LGMD2D Foundation LGMD2D Foundation

United States of America

The LGMD2D Foundation is a non-profit private foundation whose mission is to expedite the development of a cure or therapy for Limb-Girdle Muscular Dystrophy 2D (LGMD2D). In addition to educating patients and physicians, the Foundation maintains a patient registry, funds and monitors research and progress, provides financial support to accelerate clinical trials, and encourages scientific collaboration.

The mission of the LGMD2D Foundation is to support research and clinical trials to speed the development of treatments and cures for LGMD2D. Formed in September 2013, the foundation is committed to the development and maintenence of an international patient registry for individuals diagnosed with LGMD2D and to supporting relevant scientific research.

More Info
Website lgmd2d.org

 

Limb Girdle Muscular Dystrophy 2i Research Fund Limb Girdle Muscular Dystrophy 2i Research Fund

United States of America

The LGMD2I Research Fund is a non-profit private foundation whose mission is to expedite the development of a treatment for Limb Girdle Muscular Dystrophy 2I (LGMD2I). Through its grant awards program, the LGMD2I Research Fund promotes basic research, fosters clinical trial readiness and supports translation of promising scientific discoveries into clinics.

More Info
Email
Call 01 425 460 2554 Website www.lgmd2ifund.org

 

Prothelia Inc Prothelia Inc

United States of America

Prothelia's business model with its virtualized operations and low operating expenses focusses exclusively on muscular dystrophy. Benefitting from its numerous academic collaborations which provide a wealth of external expertise, Prothelia is dedicated to the patient community.

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Stichting SpierKracht Stichting SpierKracht

Netherlands

Stichting SpierKracht foundation is a small but active foundation and was founded in 2006 by parents and friends of Kaya and Sayen, who the foundation is named after.

More Info
Email
Website www.stichtingspierkracht.nl

 
 
12 Apr 2017