NDF’s United Youth is a virtual support group for the children of GNE Myopathy patients. It is an online community where young people (age 13-23) can share their experiences and offer advice to one another. This group was co-created by Ariella Rabbani and Lea Patel who both have a parent with GNE Myopathy and who wanted to reach out to preteens, teenagers, and young adults who are in a similar situation.

Request access to join our Facebook group here.

Ariella and her mom, Sepideh