Who is involved?
The World Collagen VI Awareness Day targets a broad range of people directly and indirectly affected by collagen VI deficiency myopathies. These include individuals with Ullrich muscular dystrophy, Bethlem congenital myopathy, Myosclerosis, and intermediate forms, as well as their families, doctors, and researchers dedicated to the care and study of these conditions. It also involves friends, supporters, and the wider community interested in fostering greater understanding and support for those living with these conditions. For patients, coping with a rare disease can mean isolation and difficulties accessing specialized care, making the support of a united and informed community essential.

What is at stake?
The stakes are high: a shift in public awareness and support for collagen VI deficiency myopathies could drastically improve patients' quality of life. The lack of early diagnoses and appropriate treatments perpetuates physical disability, limiting mobility, autonomy, and participation in social life. Without coordinated action, patients will continue to feel isolated, and scientific research progress risks being slowed by a lack of funding and collaboration. However, global commitment can lead to earlier diagnoses, improved access to innovative treatments, and the development of effective therapies, while also creating a support network that values every affected individual.

Why is it time to act?
Now is the time to act because we cannot afford to wait. With the establishment of the World Collagen VI Awareness Day on June 6, 2025, a unique opportunity arises to unite the global community and shine a spotlight on these rare diseases. The creation of the Global Collagen VI Network will consolidate the efforts of patients, doctors, researchers, and supporters, offering a free and unified space to share resources, information, and support.

Additionally, we aim to formally request recognition of World Collagen VI Awareness Day by the United Nations, a crucial step in giving greater visibility and institutional weight to the cause. Every day of delay represents a missed opportunity to make a difference in the lives of thousands of people. Participating means contributing to a cause that can genuinely improve patients' physical and mental well-being, as well as promoting essential scientific research. Together, we can build a better future for those living with collagen VI deficiency myopathies.

Mark your calendar for June 6, 2025, and sign the petition to support the community of patients with this rare degenerative disease!

Thank you.