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NDF in the News

Neuromuscular Disease Foundation Announces Monthly Patient Huddles for Those Affected by GNEM

Online Cognitive Health & Well-Being Support Group is Moderated by Patients for Patients

Beverly Hills, CA. – January 31, 2019:  Neuromuscular Disease Foundation (NDF) is pleased to announce the launch of its monthly Patient Huddle, a virtual, peer-to-peer support and mentoring group focused on the cognitive health & well-being of people diagnosed with GNEM. Launched on January 5th, the confidential, online support group allows patients from anywhere to discuss any topic in an open, safe, and non-judgemental forum.

“The Patient Huddle offers patients a safe space in which to connect with others who can truly understand what it’s like to have GNEM,” explains Lale’ Welsh, CEO of NDF. “For those living with a rare disease, it helps knowing there are people who understand and have also experienced similar fears, anxieties, pain and feelings of loss. Because it’s virtual, patients from all over the world can participate. We are committed to the mental well-being of those struggling with this rare disease and very pleased to be able to provide this new resource.”

The NDF Patient Huddle is open to anyone whose life has been affected by GNEM. The next Huddle will be Saturday, February 2nd at 9:00 am PT.  Moving forward, NDF Patient Huddles will take place the first Saturday of each month at 9:00 am PT.

Registration is now open for February 2nd here.

Once registration is completed, an email will be sent to each registrant with login information.

For more information, contact:


About Neuromuscular Disease Foundation

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Press contact information

Angela Moore

Starfish Public Relations

Cell: 310-429-8868


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