First World COL6 Myopathy Day

Collagen VI-related myopathies, such as Ullrich congenital muscular dystrophy and Bethlem myopathy, are rare genetic disorders that profoundly affect the lives of patients and their families.
The objectives of this dedicated day are as follows:

1. Raise Awareness and Educate: Increase public awareness and understanding of Collagen VI-related myopathies, particularly their impact within the broader spectrum of degenerative neuromuscular diseases. These conditions not only impair physical function but also take a significant toll on patients’ daily lives.
2. Foster Community and Support: Reach out to patients who may feel isolated or excluded due to this rare disease and create a supportive community, both physical and virtual, where patients and their families can share experiences, offer mutual support, and access valuable information to navigate the challenges they face.
3. Promote Research and Funding: Highlight and support ongoing scientific research aimed at mitigating the symptoms of COL6-related myopathies, while also encouraging the allocation of public and private funds to sustain and advance collaborative research efforts.
4. Create a Global Event: Establish a unique annual event on June 6th 2025, that serves as a free, inclusive platform for patients, families, researchers, and healthcare providers to connect, share insights, and foster meaningful dialogue in a supportive environment.

International Group of COL6 Patients