The 2nd Generation of The International Family Registry for Centronuclear and Myotubular Myopathies is now LIVE!

We are excited to share a new movement in the rare disease space! The International Family Registry for Centronuclear and Myotubular Myopathies is releasing its next generation. We are now collaborating with the NIH/NCATS GRDR Program, the Global Rare Disease Registry, Alan Beggs PhD and Casie Genetti, MS, CGC Research Coordinator/Genetic Counselor for Beggs' lab. 

 
Through this new collaboration, our de-identified data will be integrated into the GRDR, allowing investigators to better query patient data and accelerate research across many rare diseases, with the goal of eventually developing novel diagnostics and therapeutics.
 
We are asking for your help! If you have previously participated in the International Family Registry for Centronuclear and Myotubular Myopathies or have not yet had the opportunity to register with us, please follow the link below to learn more about our new registry and consider taking a few moments to register yourself or your loved one with centronuclear and myotubular myopathies!

**Registry link**
 
If you have any questions, please do not hesitate to contact connect@joshuafrase.org
 
Alone we are rare, together we are strong! 

Currently the registry is in five languages, English, French, Italian, Spanish and German. Please note, the first page is in english then translates to the language of your choice. If you have a request for a different translation, please don't hesitate to make that request as we have the ability to translate into 90 languages. 

Always for the Children!
The Joshua Frase Foundation