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We are always on the lookout for people who share our goals and mission, and there are many ways you may help us. Philanthropy isn’t JUST about giving money; it’s also about giving of your time and expertise. 

We need people to help with activities ranging from ushers at events, to professionals who want to share their unique talents and expertise. CPAs, doctors, designers, counselors, entrepreneurs, networkers, bloggers, event planners, fundraisers, community activists, SEOs, webmasters and social media gurus are always a good fit for us. But more importantly, we are grateful for people of all walks of life who can join us to help fufill our mission. GNE Myopathy patients and their family members are especially welcome!

Join a Committee

You are welcome to join an existing committee. Our committees range from fundraising events, scientific advisories, genetic carrier screenings, patient-centric symposia and advocacy work. Committee membership is for one year. If, at the end of one year, you would like to stay on, great! If not, you will not be pressured to stay, and we will remain eternally grateful for your service.

 If you do not know what you want to do, but want to help, please reach out to us and tell us about yourself and how you would be willing to contribute. 

Board Membership

Because nonprofit board membership carries financial, legal, and fiduciary responsibilities, our bylaws require that our board members first serve on an NDF committee in order to become eligible to apply for a Director position. NDF board membership requires a 2 year term, and each seat embodies certain areas of expertise and knowledge to best represent a cross-section of the greater communities and constituents we represent. 

If you are interested in submitting your name for consideration for a position on our Board of Directors during our next election cycle, please complete and submit this short survey telling us a little bit about yourself and your interest in our organization. Or for more information please contact as

Certified Patient Advocate

Our NDF Certified Patient Advocates (CPAs) make up a group of dedicated GNE Myopathy patients and, in some cases, family members residing in many regions of the world.  These advocates are committed to helping NDF in our efforts to bring programs to patients and families in their respective countries.  

To get more information about becoming a Certified Patient Advocate, please contact us

Each year we have a limited number of paid positions available for high school and college students. We can also work with schools to offer academic credit whenever possible. If you are interested in applying, please send us  your resume and cover letter, telling us a little about yourself and why you are interested in NDF. Be sure to place “Intern” in the subject line of your email.


Host an Event

Sometimes project based volunteerism, rather than an extended commitment, is the way to go. Whether you would like to host a fundraiser or help spread awareness about GNE Myopathy, we would love to speak with you about how you can help. Please email us and explain how you would like to contribute.

Sponsor an Event

Sometimes giving via your business is a better way to go, and it ensures that your business gets recognized as a business with a conscience and a good sense of corporate responsibility. There are many ways to reward your business with exposure that guarantees recognition from our constituents, many of whom are — or could become — your customers. 

Please contact us about your interest and we will pair you with the event that is right for your business goals.

Call your Doctor

Everyone knows at least one doctor or health care worker. We would love for you to download the detailed and comprehensive explanation of GNEM (HIBM) and give it to your doctor the next time you see him or her. You would not believe how seldom physicians have heard about this orphan disease. Email or call us and we will assist you on how discuss issues relating to GNEM with your Internist, GP, OB-GYN or neurologist should you have questions.