GNE Myopathy affects people around the globe. NDF continues to support patients and strive for an effective treatment for GNEM. During February, we want to increase awareness of those living with this debilitating disease. Globally, here are glimpses of GNE Myopathy community.
Here are some GNEM events that will be happening in celebration of Rare Disease month.
- NDF – U.S.A. will have a support Huddle for patients to join and share their “lived” GNEM experience on 11 February from 9 am. to 10 am PT. Please use this link to join the Zoom on February 11, 2024: https://us06web.zoom.us/j/84609562836
- Aux Pas Du Coeur– Côte d’Ivoire will hold rallies for Rare Disease patients from 15 to 28 February. They will be offering free consultations to patients. For additional information, see this link https://auxpasducoeur.life/
- World Without GNE Myopathy (WWGM) – India will celebrate Rare Disease month with the second addition of #febRAREuary! In their first edition, they talked about issues with diagnosis, explained the regulatory landscape, and the need for domestic drug development in India.
- This year, WWGM has refocused the lens to raise awareness about the remarkable role that WOMEN play in the rare disease community- as mothers, caregivers, scientists, authors, advocates, policy makers and artists, highlighting their incredible lives. They hope that the RARE WOMEN campaign serves as a reminder of the rich and wonderful contributions made by women and provides an impetus to support and encourage them every step of the way.
One relevant way to participate in Rare Disease Day is to make a donation to support the cause.
Donations to NDF help us continue our efforts in a variety of ways. They help empower us to overcome obstacles and move ahead assertively with our mission to enhance the quality of the lives of people living with GNE Myopathy through advocacy, education, outreach, and funding for critical research focused on treatments and a cure.
To make a donation, please click here.