LGMD ORGANIZATION: UILDM LGMD Group
ORGANIZATION: UILDM LGMD Group WEBSITE: https://www.uildm.org/ FACEBOOK: https://www.facebook.com/uildm.naz TWITTER: https://twitter.com/UILDMnazionale WHAT LGMD SUB-TYPE DOES YOUR ORGANIZATION FOCUSES ON: UILDM LGMD Group doesn’t focus on a specific LGMD sub-type. It refers to all LGMD types. WHAT INSPIRED THE CREATION OF YOUR ORGANIZATION: We have been inspired by the need of people living with a Limb-Girdle Muscular Dystrophy to be part of a representative group that could give them a voice, since it’s hard for them to find answers to their requirements and very often they are forgotten by Institutions. WHAT IS YOUR ORGANIZATION’S MISSION: UILDM LGMD Group activities focus on: [...]
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 PATIENTS JOIN? We advise all LGMD2D patients to register: https://lgmd2d.org/patient-resources/register/. It is very important to have a DNA confirmed diagnosis. If your mutation is not confirmed, it can impact your medical treatment. Is your organization a Non-Profit? If so, what type: Yes, we are a non-profit organization based in the Netherlands. We only have volunteers and no overhead. WHAT [...]
ORGANIZATION: Inclusive
ORGANIZATION: Inclusive WEBSITE: https://www.iminclusive.com FACEBOOK: https://www.facebook.com/Iminclusive INSTAGRAM: @iminclusive IS THERE A SPECIFIC LGMD SUB-TYPE YOUR ORGANIZATION FOCUSES ON? * Inclusive supports people living with LGMD, and Inclusive works towards making online and offline environments are accessible for People Of Determination (In 2016 by HH Sheikh Mohammed bin Rashid Al Maktoum introduced the term People Of Determination to describe people who were formally called special needs as outlined in the Federal Law No. 29 of 2006 Concerning the Rights of People with Special Needs in the United Arab Emirates) Inclusive welcomes everyone to its Online Platform for accessible opportunities in [...]
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 (IBMPFD). IF YOU FOCUS ON A SUB-TYPE, IS THERE A REGISTRY AND HOW CAN PATIENTS JOIN? https://www.curevcp.org/patient-registry Is your organization a Non-Profit? If so, what type: Yes, we are a 501(c)(3) public non-profit organization WHAT INSPIRED THE CREATION OF YOUR ORGANIZATION: There was no formal organization in existence to organize and provide awareness of VCP diseases to patients [...]
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, it can be accessed at www.lgmd1d.org Is your organization a Non-Profit? If so, what type: Yes, we are established an a 501 (c)(3) non-profit organization WHAT INSPIRED THE CREATION OF YOUR ORGANIZATION: Our family's long history of LGMD-ID and 40-year pursuit for a cure! We were inspired by the GRASP-LGMD project sponsored by the MDA. WHAT IS YOUR ORGANIZATION’S MISSION: [...]
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). IS YOUR ORGANIZATION A NON-PROFIT? IF SO, WHAT TYPE: Yes, we are a501(c)(3) nonprofit public charity WHAT INSPIRED THE CREATION OF YOUR ORGANIZATION: Breathe with MD was founded by Andrea L. Klein in memory of her sister Cheryl Lewis who died on Klein’s 33rd birthday at age 38 from inappropriate care for Muscular Dystrophy (MD) related respiratory failure in 2007. [...]
LGMD ORGANIZATION: AFM-Téléthon –
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 Association (French Muscular Dystrophy Association). It focuses on all subtypes of limb-girdle muscular dystrophy. IF YOU FOCUS ON A SUB-TYPE, IS THERE A REGISTRY AND HOW CAN PATIENTS JOIN? Not yet. We are currently working on a patient registry project. IS YOUR ORGANIZATION A NON-PROFIT? IF SO, WHAT TYPE?: We are a non-profit organization under the law of 1901 (French [...]
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 A REGISTRY AND HOW CAN PATIENTS JOIN? Yes, we have created a patient registry and patients can contact us by sending an email to [email protected] IS YOUR ORGANIZATION A NON-PROFIT? IF SO, WHAT TYPE: Yes, we are registered in Span and in Italy. WHAT INSPIRED THE CREATION OF YOUR ORGANIZATION: The Association was created because of the necessity to spread [...]
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 SUB-TYPE, IS THERE A REGISTRY AND HOW CAN PATIENTS JOIN? In our website we collect information regarding people affected by Lgmd2E- Lgmd2D- Lgmd2C – Lgmd2F, in accordance with the Privacy Act. Our first aim is to elaborate statistical data and in second instance we would like to create a sarcoglycanopaties patients register. Here you can read our patient statistics:http://www.beta-sarcoglicanopathy.org/index.php?option=com_content&view=article&id=47&Itemid=53 GFB [...]
ORGANIZATION: LGMD2i Research Fund
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? We are aware of one registry: the Global FKRP Registry (https://www.fkrp-registry.org/). While it is based in the UK, it is an international registry, adapted to the nature of rare diseases. LGMD2I is a very rare disease, which means that the number of people affected by it is small from the point of view of drug developers. Because advanced clinical studies [...]
