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Affiliations & Resources

In our ongoing efforts to further the mission of The RYR-1 Foundation in both funding research and providing affected individuals and their families support, resources, outreach, and advocacy, we have developed productive relationships with several important organizations and easily share external resources.

Affiliations and external resources are both listed below (please click on the logos below to be forwarded to their websites).

 

The RYR-1 Foundation also participates in numerous, regular meetings with pharmaceutical companies, biotechnology companies, and consultants around the world.

The American Physical Therapy Association (APTA) offers a consumer service called Find a PT. Find a PT allows you to search a national database of physical therapist members of the APTA for neurologic therapists.
Accessible College offers college preparation and transition support for students with physical disabilities and health conditions.
Adaptive Design Association builds custom adaptations, nurtures communities, and challenges assumptions about disability.
The French Muscular Dystrophy Association (AFM-Telethon) is an association of activists, patients and parents of patients, affected by rare, progressive and significantly disabling genetic diseases, known as genetic neuromuscular diseases.
Angel Flight NE is an organization that arranges free air and ground medical transportation for patients with limited financial resources.
APTA has patient care resources to help you in your daily practice, including consumer resources through ChoosePT and evidence-based practice resources.
BeggsLab is a research laboratory at Boston Children's Hospital, which is well known for its combination of first-rate clinical care and for its outstanding research.
CHOP OPEN provides pediatric medical education to healthcare professionals around the world. Content is developed by some of CHOP’s top doctors and other clinical experts.
The CMDIR is a global partnership of patient advocacy organizations, researchers, and clinicians, all working toward the same goal: to find treatments for congenital muscle disease.
Cure CMD was founded in 2008 by three parents, with a mission to advance research toward treatments for the congenital muscular dystrophies and empower those living with CMD through engagement and support of our community.
MTM-CNM Family Connection, Inc is a non-profit charitable organization with a mission to connect families affected by Myotubular Myopathy (MTM) and/or Centronuclear Myopathy (CNM) to resources, research, and relationships within the MTM-CNM community.
Find Empathy’s purpose is to empower mental health professionals to better serve patients living with challenging chronic illnesses and medical diagnoses.
Kennedy Krieger Institute provides children, adolescents and adults with neurological, neuromuscular, rehabilitative, or developmental needs through inpatient and day hospital programs, outpatient clinics, home and community services, education, and research.
The Muscular Dystrophy Association’s mission is to empower the people it serves to live longer, more independent lives. MDA is the #1 voluntary health organization in the United States for people living with muscular dystrophy, ALS, and over 300 other neuromuscular conditions.
The mission of MHAUS is to promote optimum care and scientific understanding of MH and related disorders.
MoneyGeek provides financial planning articles to help become financially secure at every stage of your life.
The National Genetics Education and Family Support Center works to increase access to genetic services by promoting and strengthening family engagement in the genetic health care delivery system.
Genetic and Rare Diseases (GARD) Information Center offers free access to reliable information for individuals, families and caregivers affected by rare diseases.
NIH: Resources for Rare Disease Patients and Advocates supports and provides materials and information about rare diseases.
The National Center for Biotechnology Information advances science and health by providing access to biomedical and genomic information.
NORD is an organization improving the health and well-being of people with rare diseases by driving advances in care, research, and policy.
Since 1985, Pathways.org has been a nationally recognized leader in early childhood development; helping parents and healthcare professionals work together to maximize babies' development.
The Periodic Paralysis Association is a nonprofit charitable organization committed to raising awareness, advancing science‑based information, and championing the needs of people living with skeletal neuromuscular channelopathies including periodic paralysis, non-dystrophic myotonias and related skeletal neuromuscular disorders.
The Rhabdomyolysis Foundation is determined to help survivors and families who have experienced rhabdo however it can.
The Repurposing Of All Drugs, Mapping All Paths (ROADMAP) project was spearheaded by the Castleman Disease Collaborative Network (CDCN) to create a resource that would provide guidance for rare disease organizations seeking to pursue drug repurposing, based on real world experiences.
TREAT-NMD is a global network of experts in the neuromuscular field.
Triage Health has extensive free resources for individuals diagnosed with a chronic or serious medical condition, caregivers, and health care professionals, on the legal and practical issues that may arise after a diagnosis.
The Undiagnosed Diseases Network (UDN) is a research study backed by the National Institutes of Health that seeks to provide answers for patients and families affected by these mysterious conditions.
Rare Chromosome & Gene Disorder Guides offers free information guides to specific chromosome and gene disorders, as well as guides translated into various languages.
HHS is a U.S. executive department that touches the lives of nearly all Americans by protecting your rights, research, food safety, health care, aging, and much more.
Founded in 2015, ZNM is the German self-help association for people with a group of very rare muscle diseases, the centronuclear myopathies (CNM).

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