Here are some places to find more information:
Sarah Foye, Titin Family Advocate [email protected]
Recessive Titinopathy Fact Sheet for Families
Breathe with MD, Inc. is a nonprofit with the goal to educate and raise awareness about breathing muscle weakness in Neuromuscular Disease (NMD). Please check out the website breathewithmd.org to learn about the importance of breathing issues and best care practices for people with NMD.
The Muscular Dystrophy Association (MDA) www.mda.org
About ZNM – Zusammen Stark! e.V.
(CNM – Together Strong!) is a self-help association for myotubular myopathy and other centronuclear myopathies (CNM = ZNM). They represent 165 individuals from 63 families with a CNM in Germany, the Netherlands, and Austria. As a self-help organization, their main goal is to connect those affected and their families and to support each other in their daily lives. This is mainly done by a yearly family conference, webinars, and a closed Facebook support group. They also actively invest in research to find a treatment for these conditions. For more information please visit https://www.znm-zusammenstark.org/en
Resource for Dilated Cardiomyopathy
The DCM Foundation has resources and information for people with the heart condition known as dilated cardiomyopathy. See here: https://dcmfoundation.org/
The Global Heart Hub is a global non-profit organization established to provide a voice for those affected by cardiovascular disease. An alliance of heart patient organizations, aiming to create a unified global voice for those living with or affected by heart disease. You can learn more on their website and check out the Guiding Principles for Patient Involvement and Engagement in Cardiomyopathy Research.
Team Titin is a member of the EveryLife Foundation Community Congress since 2022.
Team Titin is a member of the Treat-NMD alliance neuromuscular network since 2023.