NDF's new websiteisn't just a fresh coat of paint. The wealth of information NDF has to share has been thoughtfully recomposed and restructured to be faster to find and easier to understand. Following important guidelines, the site is significantly more accessible and ADA friendly. Users of screen readers and keyboards for website navigation (without a mouse) should have a much easier time navigating and interacting with NDF's content.
The decision to acquire and combine all former URLs, now directed toCureGNEM.org,translates to better search results, while also helping to brand the name of the disease from HIBM & Nonaka to GNEM as agreed to by global scientific consensus in 2014.
NDF Podcasts now on iTunes, starting with
Dr. Farid Halakooee and friends
All NDF Podcasts now available on Apple & Google Podcasts, Anchor, Breaker, Pocket Casts, RadioPublic, Spotify and iTunes.
NDF is pleased to present its popular speaker series again.
This year's 1st presentation will be recorded LIVE on June 4 at 10 am PDT with Dr. Angela Lek (of Yale U) reviewing scientific updates and explaining the merits of the studies NDF is funding with your support. Register here to join.
June 11, we will hear from Rich Horgan (of Forbes 30 under 30), NDF's newest biotech consultant, on what it takes to engineer a gene therapy trial for a rare monogenic disease.
Our lineup of esteemed speakers is still in formation, and our goal is to present a different topic each week throughout the summer.
Check our events page or follow us on social media to stay up-to-date.
Every other month, patients are offered FREE visits with several specialists, who are trained to look for issues in GNE Myopathy that may impact other ailments. These clinics are an official NDF program and are intended for GNE Patients only. Click here for more information or to book an appointment.
Did You know your Amazon Purchases Can Help NDF Patients?
An effortless way you can can help NDF is through Amazon Smile. When you register with this link, a percentage of every purchase goes to help support NDF programs to serve patient, carriers, and their families.
