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NDF's United Youth

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 GNEM and who wanted to reach out to pre-teens, teenagers, and young adults who are in a similar situation. Check us out on Instagram, request access to join our private Facebook group or for further information, contact us at

Ariella and her mom Sepideh 

Lea and her mom Mona