The Neuromuscular Disease Foundation (NDF) celebrates Rare Disease Day with its mission to improve treatment and opportunity for the 300 million people worldwide living with a rare disease. Through Rare Disease Day, NDF joins forces with over 100 countries and regions around the globe to enhance the quality of lives of people living with GNE Myopathy and over 6000 other rare diseases.
At NDF, we understand the immense challenges facing those affected by rare diseases, their families and their caregivers, and through advocacy, education, outreach and fundraising for critical research, we aim to enhance the lives of those living with GNE Myopathy, as well as finding treatments and a cure for this rare neuromuscular disease.
Rare Disease Day is observed on February 28 (February 29 in leap years) and is a global movement that NDF proudly joins to strengthen its own mission and community.
Raise Awareness of Rare Diseases
With a focus on individual narratives and the lived experience of rare diseases, Rare Disease Day raises global awareness of vulnerable populations who require immediate and urgent attention. Cities across the world also illuminate landmark buildings to honor Rare Disease Day. Find a location near you to #LightUpForRare.
You can also join Rare Disease Day by sharing your support on social media or share your experience with GNE Myopathy online and with friends using these downloadable graphics. By spreading awareness of rare diseases such as GNE Myopathy and what life is like living with these diseases or caring for someone with GNE Myopathy, Rare Disease Day and NDF can educate the wider public and foster their understanding and support.
Advocate for Progress in Treatments and Cures
Just as NDF has funded clinical research globally to improve treatment and work towards a cure, Rare Disease Day was founded in 2008 to encourage more advocacy work for rare disease treatments and cures on the local, national, and international level. Through awareness campaigns that shine light on people living with a rare disease, Rare Disease Day also calls on policy makers to improve and make more equitable resources and opportunities for those living with rare diseases.
Build Community Among Those Living with GNE Myopathy and Other Rare Diseases
Rare Disease Day is patient-led, but it is supported by everyone who cares about rare diseases– individuals, families, caregivers, healthcare professionals, researchers, clinicians, policy makers, industry representatives and the general public. With over 600 events scheduled worldwide for Rare Disease Day, the campaign brings together a global community that cares about rare diseases and seeks to generate change for those living with rare diseases.
GNE Myopathy is a rare disease estimated to affect around 6 in 1,000,000 people, but over 300 million people worldwide live with rare diseases. Rare Disease Days allows NDF and those living with GNE Myopathy to join a community of millions living with a rare disease to share experiences, offer support, and advocate for innovation in treatments and cures.
Spread Hope with Rare Disease Day
Rare Disease Day facilitates meaningful and uplifting conversations and interactions for those affected by a rare disease. People living with a rare disease are empowered to share their challenges, triumphs, and dreams. NDF’s Project Manager and Patient Advocate Tara Voogel shared her family story on the official Rare Disease Day website.
Through events that spread awareness, the general public is encouraged to listen to the millions of voices calling for equitable access to diagnosis, treatment, health and social care and opportunity for people affected by a rare disease.
Each experience, medical diagnosis, and treatment may be unique, but Rare Disease Day allows these differences to come together to create community, spread hope, and paint a picture of a brighter future.
Learn more about how to get involved at https://www.rarediseaseday.org.