Cure CMD

Patient Registry - Cure CMD is the administrator of the Congenital Muscle Disease International Registry CMDIR the largest database of congenital muscle disease CMD affected individuals. Our goal is to achieve global registration of the CMD community and serve as the central hub for up to date information regarding clinical studies and trials expert diagnostics and care and resources to educate affected individuals families and caregivers. Through the CMDIR the CMD community has a home a place to register - with or without genetic confirmation - and a means by which to be notified about news resources and opportunities to participate in clinical trials. The data collected and information provided has been developed with the review direction and advice of research and clinical experts affected individuals and caregivers and industry and government representatives in an effort to create a meaningful tool designed to drive the community toward treatments. The team behind the CMDIR continues to refine and perfect this tool in constant evolution to best serve the needs of the CMD stakeholder community.

Outreach & Education - While we work with the research community to identify a pipeline of future treatments for the congenital muscular dystrophies Cure CMD supports the affected community where they are today through a variety of supportive content and connections that are responsive to the their needs and giving them a prominent voice in determining Cure CMDs priorities and future programming. We host the CMD Scientific and Family Conference SciFam: scifam.info bringing together stakeholders from around the world to learn share and interrogate research progress. We host an ongoing webinar series that explores topics relevant to those living with or caring for someone with CMD. We host online support groups and other opportunities for community members to connect and share their experiences. Our Legislative Advocacy Team forges a path for community members to share their story and their needs with local state and federal policy makers. And our Executive and Scientific Directors provide 1:1 support for those newly diagnosed and struggling to understand where they should begin to ensure their affected loved one has the best possible quality of life. These are just some of the opportunities we offer to support those living with CMD and will continue to evolve our programming to best serve the communitys ever-changing needs.