You are Welcome

in the Associazione “Collagene VI Italia APS”

We are a group of patients affected by 3 rare and degenerative diseases due to collagen VI deficiency: Bethlem myopathyUllrich dystrophy and  Myosclerosis. Currently, there is no cure in the world.

Our main goal is to be a point of reference where patients and their families can meet, exchange views, and help each other.

Together as a group, we support scientific and medical research, particularly through testimonials and initiatives to raise awareness among institutions and the pharmaceutical industry so that projects aimed at discovering therapies to slow down symptoms and treat patients are funded.

– President Giulia Da Re

Italian families






Clinical Genetics and Consulting Service

The Clinical Genetics and Counseling Service is aimed at people or families who are affected or at risk of being affected by genetic diseases, ensuring them accurate diagnosis and genetic counseling.

Join the member gatherings!

Since 2017, about ten meetings have been organized in Bologna to update the patients on the progress of scientific research and to connect patients from all over Italy and their families with experienced clinicians!

Terzo incontro del 18 giugno 2016 a Bologna presso il Centro Social Ricreativo e Culturale A. Montanari

Collagen VI Italy is in close collaboration with the Padua Laboratory!

Our dear professors Paolo Bernardi and Paolo Bonaldo and their research teams have been working for years in the Laboratory of Padua to study the symptoms of the diseases of col6.

"If no one represents you, you do not exist, and so it was for the rare pathologies of deficiency of sixth collagen."

President Giulia Da Re

Join our Community

Our main goal is to be a reference point where patients and their families can meet, exchange views, and help each other. Follow our activities on our social profiles and join the private Facebook group!

To ask more informations write to:

Tell us about you!

"Being disabled means having limitations, sometimes heavy to bear, but often it puts you in a privileged position because you are more aware of the value of things."


"I would like to write a message of hope, courage, and positivity for all of you. When Giulia was born, I realized that something was wrong. We mothers have a sixth sense..."


"I believe the association is important because it helps us all stay in touch and allows us to exchange opinions, advice, and most importantly, stay informed about the advancements scientific research makes with Telethon!"