Hear community perspectives on topics ranging from navigating a diagnosis to reflecting on clinical trial experiences.
We love aquatic therapy and we love Swim Angelfish, a swim therapy program in our area. Our 4 year old son, Ned, has been a devoted "swimmer" for nearly 2 years. Not only is swimming wonderful exercise and a meaningful confidence builder, the angelfish team is exceptional.
It's National Disability Awareness Month, and what better way to celebrate than by highlighting some amazing TikTok creators who share their stories and journeys of living with a disability.
May is Ehlers Danlos Syndrome (EDS) Awareness Month, so today I’m sharing my experience with the condition. I have hypermobility type EDS (hEDS), but there are 12 other types of EDS...
Cure Rare Disease, in partnership with Charles River Laboratories, has successfully created 3 mouse models that harbor the humanized form of the dystrophin gene. Each model has a mutation that causes Duchenne muscular dystrophy that CRD is currently working to treat, meaning they can be utilized for critical in vivo studies to test the safety and efficacy of mutation-specific gene editing therapeutics. The success of this project paves the way for future therapeutics to be developed to treat rare and ultra-rare genetic disorders.