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NDF is excited to introduce our new series of podcasts in 2020 called "NDF TALKS…”

Each episode will feature a GNE Myopathy community member’s personal experience with GNEM.
Participants will include patients, scientists, caregivers and family members, all sharing the triumphs and sometimes tribulations of life with this rare disease in order to provide potentially helpful and supportive information for anyone whose life is touched by GNEM.

"NDF is our big community & strength & force to do all these things. If NDF were not there we would not make it. With NDF I'm sure the cure will be found."

                                                                                                                        -Maya

 

In NDF Talks 3rd episode, get to know one of NDF 's Certified Patient Advocates, Maya in this open and candid conversation about living with GNEM.

Each episode will feature a GNE Myopathy community member’s personal experience with GNEM.

Participants will include patients, scientists, caregivers, and family members, all sharing the triumphs and sometimes tribulations of life with this rare disease in order to provide potentially helpful and supportive information for anyone whose life is touched by GNEM.

“It is hard on my family, but we go on this journey together and I think it helps us. We are stronger together as a family..”
                                                                            -Amy, on her and her 3 siblings all having GNEM

 

In NDF Talks 2nd episode, meet Amy, NDF's Program Manager as she talks in this open and candid conversation about living with GNEM.

Each episode will feature a GNE Myopathy community member’s personal experience with GNEM.

Participants will include patients, scientists, caregivers, and family members, all sharing the triumphs and sometimes tribulations of life with this rare disease in order to provide potentially helpful and supportive information for anyone whose life is touched by GNEM.

"I'm so flabbergasted by GNEM in a good way in a really really good way because it has allowed me to become more of my true self"

                                                                                                                                     - Tara

 

In NDF Talks 1st episode, get to know NDF Program Manager Tara in this open and candid conversation about living with GNEM.

Each episode will feature a GNE Myopathy community member’s personal experience with GNEM.

Participants will include patients, scientists, caregivers, and family members, all sharing the triumphs and sometimes tribulations of life with this rare disease in order to provide potentially helpful and supportive information for anyone whose life is touched by GNEM.