ORGANIZATION: Stichting Spierkracht

ORGANIZATION:  Stichting Spierkracht

LGMD ORGANIZATION:      Stichting Spierkracht WEBSITE:   www.stichtingSpierKracht.com FACEBOOK:        https://www.facebook.com/stichtingspierkracht.nl INSTAGRAM:     https://www.instagram.com/stichting_spierkracht WHAT LGMD SUB-TYPE DOES YOUR ORGANIZATION FOCUSES ON:  We focus on LGMD2D / R3 Alpha Sarcoglycan-related IF YOU FOCUS ON A SUB-TYPE, IS THERE A REGISTRY AND HOW CAN

ORGANIZATION: Cure VCP Disease, Inc.

ORGANIZATION:  Cure VCP Disease, Inc.

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

ORGANIZATION: LGMD-1D DNAJB6 Foundation

ORGANIZATION:  LGMD-1D DNAJB6 Foundation

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,

ORGANIZATION: Breathe With MD

ORGANIZATION:  Breathe With MD

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).

ORGANIZATION: Conquistando Escalones

ORGANIZATION:  Conquistando Escalones

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

ORGANIZATION: GFB ONLUS

ORGANIZATION:  GFB ONLUS

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

ORGANIZATION: Beyond Labels & Limitations

ORGANIZATION:  Beyond Labels & Limitations

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

ORGANIZATION:  Jain Foundation 

ORGANIZATION:  Jain Foundation 

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,

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