Muscle GSDs are ultra-rare conditions which require global co-operation. IAMGSD liaises with both national and international organizations covering GSDs, in-born errors of metabolism and rare diseases more widely.
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RARE DISEASE ORGANISATIONS
EUROMAC is a registry of patients affected by McArdle Disease and by other forms of rare neuromuscular glycogenosis where exercise intolerance is the main symptom. It is consortium of 15 hospitals and research institutes across Europe. They co-operated with AGSD-UK to translate and produce books, leaflets, emergency cards and videos in eight languages.
An integrated health system headquartered in the Dakotas. Sanford Health is one of the largest health systems with a presence in 26 US states and nine countries. Sanford Research supports basic, translational and clinical research in diverse areas including rare diseases. CoRDS is a centralized international patient registry for all rare diseases. They work with patient advocacy groups, including IamGSD, individuals and researchers. We plan to jointly launch a registry for muscle GSDs in early 2020.
CANADIAN ORGANIZATION FOR RARE DISORDERS
The Canadian Organization for Rare Disorders (CORD) is a national network for organizations representing all those with rare disorders. CORD provides a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders. CORD works with governments, researchers, clinicians, and industry to promote research, diagnosis, treatment, and services for all rare disorders in Canada.
NATIONAL ORGANIZATION FOR RARE DISORDERS
The National Organization for Rare Disorders (NORD) is a non-profit patient advocacy organization that is dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 260 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.
EURORDIS: RARE DISEASES EUROPE
EURORDIS - Rare Diseases Europe is a unique, non-profit alliance of over 700 rare disease patient organizations across Europe that work together to improve the lives of the 30 million people living with a rare disease in Europe. By connecting patients, families and patient groups, as well as by bringing together all stakeholders and mobilizing the rare disease community, EURORDIS strengthens the patient voice and shapes research policies and patient services.
Orphanet is a multi-stakeholder, global consortium of 40 countries, that is coordinated by a core resource team at the French National Institute of Health and Medical Research (INSERM). Orphanet offers a range of freely accessible information: inventory of rare disease, and encyclopedia of rare diseases, a directory of expert resources, guidelines for emergency care, diagnostic tools, and a collection of reports and datasets.
Reneo is a clinical stage pharmaceutical company focused on the development of therapies for patients with genetic mitochondrial diseases. They are currently advancing a novel molecule into several other diseases, including McArdle disease. Many of these diseases are associated with deficits in cellular metabolism and energy production. The goal is to improve daily function and quality of life of patients suffering from these diseases, most specifically, by improving how their mitochondria work.
NATIONAL SUPPORT ASSOCIATIONS
ASSOCIATION FOR GLYCOGEN
STORAGE DISEASE (UK)
The AGSD-UK provides support and help for individuals and families affected by Glycogen Storage Disease (GSD). It does this by putting people in contact, providing information, issuing Newsletters and holding Conferences and Workshops. It has been the leading patient group in McArdle disease for 20 years or more.
ASSOCIATION FOR GLYCOGEN
The AGSD was established in 1979 in order to create an organization which would be a focus for parents of and individuals with glycogen storage disease (GSD) to communicate, share their successes and concerns, share useful findings, provide support, create an awareness of this condition for the public, and to stimulate research in the various forms of glycogen storage disease.
SELBSTHILFEGRUPPE GLYKOGENOSE DEUTSCHLAND EV
The German self-help group is aimed at people who are affected by glycogenosis as well as their families and all other interested parties. The association provides extensive information and is a lively network for the exchange of experience. Together with national umbrella organizations and integrated into international activities, the self-help group of glycogenosis represents the interests of the affected people and is a valued contact in specialist circles.
L’ASSOCIATION FRANCOPHONE DES GLYCOGENOSES
AFG, Association Francophone des Glycogenoses, was created in 1992 by the parents of children and by adults affected by Glycogenosis. Its goal is to be a center of mutual aid for all people affected by GSD, to share information, to provide help and support and to promote research and appropriate medical services.
SCANDINAVIAN ASSOCIATION FOR GLYCOGEN STORAGE DISEASE
The Scandinavian Association (SAGSD) provides support and help for individuals and families affected by hepatic (liver) types of Glycogen Storage Disease (GSD). We will help doctors, dietitians and patients establishing contact, providing information and holding conferences and meetings. The SAGSD has members from Sweden, Denmark, Norway and Finland. Both children and adults are members. So far we have 35 patients/families mostly with the liver types of GSD types.
ASOCIACIÓN ESPAÑOLA DE ENFERMOS
The Asociacion Española de Enfermos de Glucogenosis (AEEG), was constituted by patients and their families affected by the different types of GSD, as well as by health personnel with an interest in the treatment of these rare diseases.