The main objectives of the No Myolyse Association are:
-To make the myolysis and Tango2 disease known to the public.
The purpose of the Association is to raise awareness of the myolysis and to educate the general public, family members and health professionals about the myolysis, which is a muscle disorder that can be caused by various factors, including rare genetic disorders such as Tango2, Lipin1...
The myolysis leads to the destruction of muscle tissue. It remains untreated to this day.
-To gather, provide information and moral support to families.
Our goal is to reach, inform and bring together all families affected by the myolysis. We hope to bring them our assistance and support.
-To encourage research.
Thanks to the mobilization of families who are members of No Myolysis, to the donations made, and also to the organization of local events dedicated to raising funds, we can financially support medical research to fight against this condition.
In this respect, the actions carried out by the Association are:
Science and research: Promoting metabolic or fundamental research through targeted actions and by helping to make it accessible to the greatest number of people.
Social help: Providing people affected by the disease and their families with material and moral assistance through support and accompaniment that will enable them to break their isolation and to find their place in our society socially or professionally.
Education: Fostering the dissemination and sharing of information in all countries:
on the disease (how to recognize it, diagnose it....
on progresses in research
on advances in treatment
To do this, No Myolysis uses various media (in particular regular press releases posted on its website and social networks), and collaborates with other associations also fighting against rare genetic diseases with symptoms of recurring myolysis, in particular rhabdomyolysis, in order to gather and leverage the information collected by all.
Board members :
President and founder
Treasurer and co-founder
This site was designed by volunteers, the information provided, after validation by our scientific expert, is for information only and can in no way replace a medical consultation.