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For Patients

Where to get screened
For more information about genetic screening or to order a genetic test kit, contact one of our partners:

If you think you may have weak muscle symptoms you can
get an online diagnosis at the Jain Foundation 

*Officially called GNE Myopathy, also known as: HIBM (Hereditary Inclusion Body Myopathy),  Nonaka Myopathy, DMRV (Distal Myopathy with Rimmed Vacuole), QSM (Quadriceps Sparing Myopathy), HIBM2 (Hereditary Inclusion Body Myopathy Type 2), IBM2 (Inclusion Body Myopathy Type 2)


To learn more about the importance of genetic screening, view this webinar presented by our partners at JScreen.


Jscreen’s Estie Rose also discusses the importance of pre-conception genetic screening with Karen Koren on her “Soul Sessions with KK” podcast

"Genetic Testing: It’s Not Just For Ashkenazis"


NDF Ambassadors

NDF Ambassadors is a group of motivated young professionals focused on spreading awareness of Hereditary Inclusion Body Myopathy (HIBM). Our mission is to eradicate HIBM by raising awareness and promoting genetic screening.  

To learn about upcoming events or to contact us, visit us on Instagram or via e-mail