NAME OF ORGANIZATION: Cure VCP Disease, Inc. WEBSITE: https://www.curevcp.org FACEBOOK: https://www.facebook.com/curevcpdisease/ TWITTER: @LostTexanInGA WHAT LGMD SUB-TYPE DOES YOUR ORGANIZATION FOCUSES ON: VCP diseases and specifically Inclusion Body Myopathy associated with Paget’s disease of bone and Frontotemporal Dementia
NAME OF ORGANIZATION: LGMD-1D DNAJB6 Foundation WEBSITE: www.lgmd1d.org FACEBOOK: https://www.facebook.com/LGMD.1D WHAT LGMD SUB-TYPE DOES YOUR ORGANIZATION FOCUSES ON: LGMD-1D, although we are currently a registry for LGMD 1A to 1H IS THERE A LGMD PATIENT REGISTRY? Yes,
NAM E OF ORGANIZATION: Breathe with MD, Inc. WEBSITE: https://breathewithmd.org/ FACEBOOK: https://www.facebook.com/BreatheWithMD/ TWITTER: @BreatheMD WHAT LGMD SUB-TYPE DOES YOUR ORGANIZATION FOCUSES ON: Breathe with MD focuses on all forms of neuromuscular diseases (NMD) including Limb Girdle Muscular Dystrophy (LGMD).
NAME OF LGMD ORGANIZATION: French LGMD Patient Group (GI LGMD) WEBSITE: https://lgmd.afm-telethon.frFACEBOOK: https://www.facebook.com/GILGMD/TWITTER: https://twitter.com/gilgmd WHAT LGMD SUB-TYPE DOES YOUR ORGANIZATION FOCUS ON?: The French LGMD Patient Group was created at the beginning of 2018 and is part of the AFM-Téléthon
NAME OF ORGANIZATION: CONQUISTANDO ESCALONES WEBSITE: www.conquistandoescalones.org FACEBOOK: www.facebook.com/conquistandoescalones TWITTER: @AceDistrofia WHAT LGMD SUB-TYPE DOES YOUR ORGANIZATION FOCUSES ON: We focus on Limb Girdle Muscular Dystrophy type 1F (LGMD1F) IF YOU FOCUS ON A SUB-TYPE, IS THERE
NAME OF ORGANIZATION: GFB ONLUS (GRUPPO FAMILIARI BETA-SARCOGLICANOPATIE ONLUS) WEBSITE: www.lgmd2e.org FACEBOOK: www.facebook.com/gfbonlus-1045732368903903 TWITTER: twitter.com/gfbonlus WHAT LGMD SUB-TYPE DOES YOUR ORGANIZATION FOCUSES ON: We focus on Limb Girdle Muscular Dystrophy type 2E (LGMD2E) IF YOU FOCUS ON A
NAME OF ORGANIZATION: LGMD2i Research Fund WEBSITE: http://www.lgmd2ifund.org/ FACEBOOK: https://www.facebook.com/jeanpierre.laurent.58173 WHAT LGMD SUB-TYPE DOES YOUR ORGANIZATION FOCUSES ON: We focus exclusively on LGMD2I IF YOU FOCUS ON A SUB-TYPE, IS THERE A REGISTRY AND HOW CAN PATIENTS JOIN?
NAME OF ORGANIZATION: Beyond Labels & Limitations WEBSITE: www.BeyondLabelsLimitations.com FACEBOOK: https://www.facebook.com/groups/29111827568/ YouTube Channel: www.youtube.com/user/John71377 WHAT LGMD SUB-TYPE DOES YOUR ORGANIZATION FOCUS ON: LGMD2A / Calpainopathy IF YOU FOCUS ON A SUB-TYPE, IS THERE A REGISTRY AND HOW
NAME OF ORGANIZATION: LGMD2L Foundation WEBSITE: LGMD2L-Foundation.org Facebook: Https://www.facebook.com/LGMD2L-Foundation Twitter: @LGMD2L WHAT LGMD SUB-TYPE DOES YOUR ORGANIZATION FOCUSES ON: We focus on Limb Girdle Muscular Dystrophy type 2L (LGMD2L) IF YOU FOCUS ON A SUB-TYPE,
NAME OF ORGANIZATION: Jain Foundation WEBSITE: www.jain-foundation.org FACEBOOK: www.facebook.com/JainFoundation/ TWITTER: https://twitter.com/JainFoundation WHAT LGMD SUB-TYPE DOES YOUR ORGANIZATION FOCUSES ON: Dysferlinopathy (LGMD2B/Miyoshi Myopathy Type 1), which are caused by mutations in the dysferlin gene. IF YOU FOCUS ON A SUB-TYPE,
NAME OF ORGANIZATION: The Speak Foundation WEBSITE: www.thespeakfoundation.com FACEBOOK: www.facebook.com/THESPEAKFOUNDATION WHAT LGMD SUB-TYPE DOES YOUR ORGANIZATION FOCUSES ON: All forms of neuromuscular diseases including LGMD. Is your organization a Non-Profit? If so, what type: U.S.-based 501 (c)(3) tax-exempt
NAME OF ORGANIZATION: CureLGMD2i Foundation WEBSITE: www.curelgmd2i.com FACEBOOK: www.facebook.com/CureLGMD2i/ WHAT LGMD SUB-TYPE DOES YOUR ORGANIZATION FOCUSES ON: LGMD2i and The Dystroglycanopathies (FKRP) IF YOU FOCUS ON A SUB-TYPE, IS THERE A REGISTRY AND HOW CAN PATIENTS JOIN? FKRP
NAME OF ORGANIZATION: Coalition to Cure Calpain 3 WEBSITE: CureCalpain3.org FACEBOOK: Coalition to Cure Calpain 3: Overcoming LGMD2A/Calpainopathy Twitter: @CureCalpain3 WHAT LGMD SUB-TYPE DOES YOUR ORGANIZATION FOCUS ON: LGMD2A, a form of