1 in 20 people will live with a rare disease at some point in their life. Rare Disease Day improves knowledge amongst the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living with rare diseases.
Throughout February, show your support of everyone affected by SMA and other rare diseases by participating in our planned activities:
Start a Facebook fundraiser! This is an easy way to raise funds, spread awareness and encourage your friends to get involved.
Add a photo of you or your family to our Rare Disease Day community album.
Change your profile picture to include our Twibbon banner!
Register for our Advocacy 101: Learn How to Make a Difference webinar on February 20th.
Share SMA fact graphics on social media.
Download the Cure SMA Guide App to access important SMA-specific information at the touch of a finger.
Follow our Facebook, Twitter and Instagram pages.
More about Rare Disease Day
The 12th International Rare Disease Day, coordinated by EURORDIS, is on February 28th, 2019. Patient organizations from all across the globe, including Cure SMA, recognize this day as an opportunity to raise awareness of and support for all those affected by rare disease.
The 2019 theme for Rare Disease Day is ‘Bridging Health and Social Care’. For most people living with rare diseases like SMA, the reality of daily life can include any combination of the following: collecting and taking medication, attending appointments, participating in physical therapy, using specialist equipment and accessing various social and community support services and care. Managing care-related tasks alongside daily activities such as school, work and leisure time can be challenging.
This year, Cure SMA expects two major milestones in the SMA drug pipeline. Combined with the approval of Spinraza, the landscape of SMA and the experience of those living with the disease has changed.
These changes mean local support and care are more important than ever. Individuals and families currently living with SMA must have access to customized support and programs in the communities where they live, attend work or school, and receive their treatment.
While we work year-round to bridge the gap in health and social care for those affected by SMA, February is a great time to highlight the importance of such programs. We’re excited to share more with you leading up to Rare Disease Day and throughout the year!