Welcome to ACMCRN's Rare Disease Day page. The last day of February every year is Rare Disease Day. With over 300 million people worldwide having a rare disease, shining the spotlight on Rare Diseases is not only important, it’s necessary. We have joined the movement to bring awareness to rare diseases.
In the United States alone, nearly 10% of people in the country have a rare disease--that’s about 30 million people. The estimated yearly medical care costs total about $400 billion in the United States alone. Safe, effective treatments exist for only a few hundred of the about 7000 known rare diseases.
Several large and small rare disease organizations have banded together with the hopes that the scientific communities research will reach the following priorities for rare diseases:
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Shortening the time by finding early indicators of rare diseases.
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Tackling many diseases at a time by focusing on what they have in common. If several diseases have the same cause, they could be treated the same way. Making it easier and more efficient for scientists to discover and develop drugs for rare diseases.
Emmalyn Strong
Meet Emmalyn, our Faces of Arachnoiditis featured story. Emmalyn has several rare diseases, including pseudomeningocele, Adhesive Arachnoiditis, and Ehler's Danlos Syndrome (EDS). Emmalyn has had over 51 brain and spine surgeries which began with a Chiari Decompression at age 3.
Emmalyn's story is so very important because of the many mistakes that were made in her care and the medical community owes it to her to learn the lessons from it and we owe it to her to spread awareness of rare diseases. Click on the button below to read Emmalyn's story.
Visit our fundraising store and check out our new Rare Disease Day merchandise. You'll find t-shirt's, hoodies, tote bags, and pins. The profit from the sales go to our nonprofit to be used for education, awareness, and research for Arachnoiditis.
In addition to the Rare Disease merchandise, we have collections for Complex Regional Pain Syndrome (CRPS), Arachnoiditis, with more being added often.
Rare Disease Day
View the official Rare Disease Day video from RareDiseaseDay.org and visit their website to see the organizing force behind Rare Disease Day.
Rare Disease Day's website offers you lots to choose from. You'll find events near you, read stories from other rare disease patients, download materials to share on social media, and more. The social media downloads includes, filters for Instagram and Facebook, Facebook profile frames, Facebook and Twitter banners, and virtual videoconference backgrounds if you choose to hold an online event, and so much more.
Our 2022 Rare Disease Day Video Presentation
Grab some popcorn, sit back and relax and watch our video presentation for Rare Disease Day. You will learn more about living with a rare disease and what that means to you and your family. Listen to other patients who are going through the same thing that you are. Although the patient testimony is powerful and can evoke strong feelings, hopefully by the end of the video, you will feel empowered and learn some important tools for coping with your new life with a rare disease, including how to discuss your situation with your medical professionals.