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We work to enhance the quality of life for those living with GNE Myopathy by funding critical research focused on treatments and a cure through The International Gene Therapy Development Program (IGTDP) and by advocacy, education and outreach.

We work to enhance the quality of life for those living with GNE Myopathy by funding critical research focused on treatments and a cure through The International Gene Therapy Development Program (IGTDP) and by advocacy, education and outreach.

Our Virtual Learning Library provides recordings of our GNEM Speaker Series events, podcasts, and webinars and is an invaluable resource where you can find answers to many of your questions about GNE Myopathy and the work of NDF.

GNEM Learning Library
What is GNE Myopathy?
Are there treatments for GNE Myopathy?
How does NDF support patients?
Recently Diagnosed?

For Patients

For Scientists

Be Part of the Solution

Our impact at a glance:

4873

People Served Annually

5000

Individual Supporters

$9M

Funded in service of GNEM Science & Programs

45

Countries

43

Associated Scientific Advisors

Our Global Impact

NDF World Map

Tara

USA – California

Tara Voogel. GNEM Patient, PAPM and Board of Directors.
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Amy

USA – Pennsylvania

Amy Curran is a patient with GNE myopathy (GNEM) from the suburbs of Philadelphia, Pennsylvania. She is the youngest of four siblings, all of whom have GNEM.
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Al

USA – Minnesota

I was born in 1963 and live near Rochester, Minnesota, US. I have seven siblings; five of us have GNEM.
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Saskia

Germany

“If you don’t fight, you’ve already lost” is my slogan. I do not fight against the disease, but for a happy life and a good quality of life.
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Rushab

India

Rushab, GNEM Patient. Read his story here.
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Melissa

USA – Georgia

"I was properly diagnosed in January 2016 with what doctors called HIBM (Hereditary Inclusion Body Myopathy/Myositis) now known as GNEM but I was affected by my rare condition in 2012 when I started falling down for no reason at all."
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Mona & Lea

England

Mona is a GNEM Patient and PAPM and her daughter is a carer as well as an United Youth Ambassador for NDF.
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Valenee

England

Hi! My name is Valenee, I am 36 years old and I am a Primary School Teacher. I am British and live in London, UK. My parents are Indo-Caribbean from Trinidad and Tobago. I was diagnosed with HIBM (GNE Myopathy) in 2010.
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The Neuromuscular Disease Foundation is a 501(c)(3) nonprofit organization
EIN: 06-1789643

© 2022 Neuromuscular Disease Foundation

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Please be advised that content within the NDF website includes a compilation of material from differing sources. NDF does not provide medical advice nor is NDF a medical provider. This content is intended for informational purposes. Please contact your health care provider(s) for your specific healthcare needs. The NDF website contains links to external websites that are not  in any way affiliated with NDF. NDF suggests that you review the terms of service and privacy policies of these websites before using them. Please note that NDF does not guarantee the accuracy, relevance, timeliness, or completeness of any information on these external websites.
 
 

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