BE PART OF THE 1ST WORLD COL6 MIOPATHY DAY!
YOUR STEPS FORWARD
6 JUN 2025
ENJOY NOW!
As a collaborative effort to globally raise awareness
…we are excited to announce the Institution of the 1st World Day dedicated to Collagen 6 Deficiency Myopathies and the establishment of the Global Collagen 6 Network.

This twofold initiative aims to unite the global community of people suffering from Ullrich Muscular Dystrophy, Bethlem Congenital Myopathy, Myosclerosis, and intermediate forms, their family members, their excellent physicians and researchers and all supporter friends!
our purposes
By shedding light on these rare disorders, we aim to drive earlier diagnosis, improve access to treatment, and promote the development of effective therapies.
Establish a global celebration event on Friday June 6th, 2025!
Highlight and support ongoing scientific research...
Reach out all patients who may feel isolated or excluded...
Understanding of Col6 myopathies!
Discover the organizations and individuals supporting the COL6 community. By working together, we amplify our impact, drive research, and bring hope to those affected.
Join us in making a lasting difference for everyone living with COL6 myopathies.
Meet our partners and make the difference
Join our community and support individuals with COL6-related myopathies. Your involvement can make a difference by raising awareness, advocating for research, and improving the lives of those affected by this rare condition.
Together, we can achieve more!
Discover the latest updates on COL6-related myopathies from around the globe. Stay informed about groundbreaking research, patient stories, advocacy efforts, and initiatives raising awareness for this rare condition affecting the collagen
VI protein.
Become our friend and help us
News worldwide about col6 myopathy
Download content or edit it by yourself!
Download the informational materials about col6 related
myopatihies and social media posts prepared for you! Share and spread awareness to support
the COL6 community.
Скачайте информационные материалы и посты для соцсетей, подготовленные для вас! Поделитесь И распространяйте осведомленность, чтобы поддержать сообщество COL6!
ENJOY NOW!
ENJOY NOW!
Scarica i contenuti informativi sulle miopatie da deficit del col6 e
I post social preparati per te.
Condividi e diffondi
consapevolezza per supportare la
comunità COL6!
ENJOY NOW!
The World Col6 Myopathy Day as a United Nations Day!
Sign It Now!
...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 the 6th of June
2025, and join us in the efforts to support the rare patient community and advance the Global Collagen VI Network.
Participation and support are so crucial!
Сontant us!
Be part of the World Collagen 6 Myopathy Day on 6th of June 2025! Your Steps Forward.