In a world that often overlooks the challenges faced by those with rare diseases, Rare Disease Day serves as a beacon of hope, a day dedicated to raising awareness and advocating for change. With 300 million people worldwide grappling with rare diseases, the need for collective action is more crucial than ever.
Rare Disease Day serves as a powerful call to action, urging individuals and businesses worldwide to unite and share their colours via social media, events and illuminating buildings, monuments and homes. By sharing their colours, individuals contribute to a global movement that aims to transform the narrative around rare diseases, advocating for equity in social opportunities, healthcare, and access to essential diagnosis and therapies.
With a commitment to expediting the progress of effective treatments and ensuring optimal diagnosis and care for individuals with neuromuscular diseases globally, TREAT-NMD are of course passionate about sharing our colours and showing our support for Rare Disease Day. So throughout the year, we have illuminated several local monuments in support of the following neuromuscular awareness days:
- Facio Scapuloperoneal Muscular Dystrophy (FSHD) Day – June 20
- Spinal Muscular Atrophy (SMA) Awareness Month – August
- World Duchenne Awareness Day – Sept 7
- Myotonic Dystrophy Awareness Day – Sept 15
- Limb-Girdle Muscular Dystrophy (LGMD) Awareness Day – Sept 30
In celebration of this year’s Rare Disease Day we’ve compiled a video capturing the illuminations, the video not only highlights the beauty of these landmarks bathed in vibrant colours, but also serves as a testament to TREAT-NMD’s commitment to shining a light on people living with rare diseases.
By illuminating monuments, sharing experiences, and calling for change, we can collectively contribute to improving the lives of those living with rare diseases. Together, we can continue to be a source of hope and support for the 300 million individuals around the globe who are part of this rare and resilient community. Please join us and share your colours too!
