Get Ready for SRNA’s Rare Disease Month this February!
The month of February begins next week, which means that SRNA’s Rare Disease Month is around the corner. During SRNA’s Rare Disease Month, we will raise awareness for the rare diseases that affect over 300 million people across the world by sharing stories, resources, facts, and helpful tips during the entire month of February.
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, the psychological and emotional challenges can all be challenging. This is why it is critical to advocate for change and awareness. We are here to show that there is strength in numbers. As we collectively fight for a brighter future for all those affected by rare diseases, we will transform the future for diagnosis and treatment of rare.
This year, we are excited to announce that we will be hosting a virtual “Rare Do Care” Virtual Walk-Run-N-Roll Challenge! Celebrate Rare Disease Month with SRNA by joining the challenge. Between now and February 28th, log your miles as you walk, run, or roll in your neighborhood. You get to choose the distance you go and how you’ll get there! Walk, run, or roll your way to your goal – and raise money and awareness along the way! You can sign up to join the challenge here.
On February 14th, we will celebrate Carentine’s Day, a day in which you can show your support for the SRNA community and our mission. Although Valentine’s Day is often thought of as a celebration of romance, love can take many different forms. It is found through community, friendship, and family. It is expressed through empathy, support, and caring. You can find out more about SRNA’s Carentine’s Day campaign and how to get involved here.
The awareness month will culminate on February 28th, with a special support group meeting for Rare Disease Day. Join from anywhere in the world and connect with others in the SRNA community! The meeting will include a presentation by Sadie Kleiman LMSW, a Social Worker and Educator from the Barrow Neurological Institute, on “Accessing Resources for Individuals with Rare Diseases.” Learn more and register to attend here.
Finally, follow us on Facebook, Instagram, and Twitter, and join us this month in sharing facts and raising awareness about your rare disorder. Also, we’re inviting you to share your story as part of the “This is Me” Awareness Campaign. 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.
