On February 1, we’re kicking off our Rare Disease Month to raise awareness for over 400 million people affected by rare diseases globally — which includes members of our community.
Having a rare disease is not easy. It is so much more than just a diagnosis. Finding support is difficult because not many people share the same diagnosis. The unanswered questions, the lack of experts nearby, and the psychological and emotional challenges can be challenging. And the list goes on.
Rare diseases are often unknown and overlooked, falling through the cracks when it comes to research budgets and treatment development. People don’t seem to care enough.
We are here to prove the opposite. Because we —and you— do care. There is strength in numbers. If we, the public, patients, industry, regulators, policymakers, healthcare professionals, researchers, politicians, and advocacy organizations collectively fight for a brighter future for all those affected by rare diseases, we will transform the future for diagnosis and treatment of rare.
Make a Difference: Six things you can do
1. Get the Word out
Our social media is filled with images and resources. Spread awareness by sharing our social media posts and #SharetheFacts during SRNA’s Rare Disease Awareness Month. Follow along on Facebook, Instagram, and Twitter, and join us this month in sharing facts about rare neuroimmune disorders! Easy peasy!
2. Share your story
By bringing the faces and voices of those living with rare neuroimmune disorders to the forefront, we can empower our communities, researchers, physicians, and governing entities to understand this rare and life-altering diagnosis better. Share your story in video or written format to be featured in our #ThisIsMe campaign or blog!
3. Send a #carentine
On February 14th, join us in celebrating Carentine’s Day. Show your support by creating your #carentine fundraiser or sending a #RareDoCare e-card to someone special in your life.
4. Take on a challenge
Don’t underestimate your power to start a movement! Pick something that you like doing. Do you enjoy working out? Take on an athletic challenge. Are you an artist? Challenge yourself to create five new pieces a day. Like to bake? Organize a bake sale. Consider setting up a fundraising page, where you can share about your challenge and invite others to contribute and make a difference.
5. Contact your legislators
Legislators have the power to pass bills into law that will have a direct impact on people. Contact public officials and tell them your story. Tell them you support policies that meet the unmet needs of individuals diagnosed with rare neuroimmune disorders. In the United States, send a request to your mayor or governor for a proclamation in recognition of Rare Disease Awareness Month in your city or state. Speak up and speak out to make a difference!
6. Connect and learn
No matter where you are in the world, we invite you to join us as we recognize and spread the word about SRNA’s Rare Disease Awareness Month. Get to know others in the community and learn about rare experiences during the #RareRoundtable coming up during our Rare Disease Day event.
Represent: Wear for rare
What will you do this #SRNARareDiseaseAwarenessMonth?
Email [email protected] and share your acts of awareness.