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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.

A French patients' organization fighting neuromuscular diseases
An organization that arranges free air and ground medical transportation for patients with limited financial resources
An organization that advances research toward treatments for the congenital muscular dystrophies
An organization that connects families affected by Myotubular Myopathy (MTM) and/or Centronuclear Myopathy (CNM)
An institute that 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
Financial planning articles to help become financially secure at every stage of your life
An organization improving the health and well-being of people with rare diseases by driving advances in care, research, and policy
An adaptive technology reuse program
A project that provides guidance for rare disease organizations seeking to pursue drug repurposing, based on real world experiences
An organization that is a global network of experts in the neuromuscular field
A German self-help association for people with Centronuclear Myopathies (CNM)

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