Rare Disease Day is 26 days away! Throughout February, we are raising awareness alongside the National Organization for Rare Disorders (NORD) and EURORDIS for the rare diseases that affect over 400 million people across the world. This globally-coordinated movement is a chance to energize and focus efforts for local, national, and international advocacy efforts.
Whether you have ADEM, AFM, MOGAD, NMOSD, ON, or TM, or have a family member with one of these disorders, you are not alone. At SRNA, we like to say that we are all stronger together. By coming together and advocating for all rare neuroimmune disorders, we can continue building a more inclusive and supportive community. By bringing our voices together, we can create a louder, more powerful message. support one another and work towards a future where all individuals with rare neuroimmune disorders have the care and support they need. As community member Susanne from Germany said, “There is power in numbers. A big group has more power to raise awareness. It’s comforting to communicate with people that share similar experiences.”
How will you be a rare advocate this month? There are many ways to advocate for rare diseases in your community no matter where you are located!
- Educate yourself and others. Spend some time exploring our resource library and take some time to learn about the rare neuroimmune disorders – even those you might not be directly impacted by! You can make a difference by starting a conversation with your community and sharing what you learn.
- Share the love. 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. You can find out more about SRNA’s Carentine’s Day campaign and how to get involved here.
- Take on a challenge. Don’t underestimate your power to start a movement! 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.
- Share your story. Consider sharing your own story or the story of someone you know who is affected by a rare disease. This can be a powerful way to raise awareness and encourage others to get involved in advocating for these conditions. You can share your story on social media, submit a written piece for the SRNA blog, film a video for our #ThisIsMe campaign, or tell us why you think raising awareness matters here.
- Show your support. Wear for rare by showing your support in a Rare Do Care shirt or sweatshirt.
- Listen and engage. The awareness month will culminate on February 28th with a Rare Roundtable event on Rare Disease Day. Join from anywhere in the world and connect with others in the SRNA community! Learn more and register to attend here.
- Contact your local representatives. Another way to advocate for rare diseases is to contact your local representatives, such as your city council members, state legislators, and members of Congress. Let them know about the challenges that people with rare diseases face, and ask for their support in addressing these issues.
All month long, follow along on Facebook, Instagram, and Twitter, and join us in sharing facts and raising awareness about your rare disorder. 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 these rare and life-altering diagnoses better. Together, we can raise awareness about the unique challenges faced by those living with these conditions and work towards improving therapy options and quality of life for all.