Welcome to Team Titin!
If you are reading this you have likely been told you have a variant in the titin (TTN) gene that may be the cause of a muscle or heart disorder. Please know that you are not alone!
Getting a clear diagnosis of a titin related muscle or heart disorder can sometimes take a long time. Please know that there are other people on a similar journey.
You can connect with other families experiencing something similar on Facebook through either:
- Our public Facebook page here: https://www.facebook.com/TeamTitin or
- In our private Facebook discussion group here: https://www.facebook.com/groups/teamtitin
Please note that the private discussion group is for affected individuals and their families only.
Contact a Titin Advocate for more information:
Sarah Foye firstname.lastname@example.org (973) 797-9305
Fact sheet about recessive titinopathy click here.
What is LGMD from the MDA click here.