Today we’re kicking off our Rare Disease Month to raise awareness for over 400 million people affected by rare disease 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, 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.
Follow us on Facebook, Instagram, and Twitter, and join us this month in sharing facts, your personal story, and raising awareness about your rare disorder. This month, 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.