Updated: Feb 18
In the Congenital Muscular Dystrophy (CMD) world, we know our disease is rare. And if you look at the numbers in each subtype, the groups become even more rare. Living with a rare disease such as CMD can be challenging and isolating when you are the only person in your city, area, state, or even country affected by CMD.
Fortunately we are not alone.
Rare Disease Day was created by EURORDIS (The European Organization for Rare Disorders) and was first launched in 2008 with the Council of National Alliances. The National Organization for Rare Disorders (NORD) organized the first Rare Disease Day events in the US a year later. The objective was to build a global awareness campaign to help bring rare diseases to the spotlight. The date February 29 was chosen because, as Leap Day, it’s rare!
With an estimated 350 million people worldwide and 25-30 million Americans affected by a rare disease, the message of Rare Disease Day is that rare isn’t rare. Despite the differences among each unique disease, many in the rare disease community share similar diagnostic journeys, limited access to information and treatment, and so much more. Rare Disease Day is a chance for us in the rare disease community to shine a light on our unique struggles and the work that needs to be done to find treatments and cures for rare disease. There are over 7,000 identified rare diseases and counting, but only 5% of them have FDA approved treatments or cures. And because of their rarity, medical research can be difficult.
We encourage you to observe Rare Disease Day this coming February 29th. There are so many ways for you to be involved!
Join the Cure CMD Advocacy Team. You decide your level of involvement. Sometimes advocacy only takes a few minutes!
Show your Stripes! Tell your story! The zebra is the official symbol of rare diseases in the United States and is noted for its black and white stripes, which are central to its uniqueness. Everyone has his/her own stripes, those characteristics that make each individual distinct. If you share on social media, use #ShowYourStripes
Attend a Rare Disease Day event near you. Find one here.
Organize your own Rare Disease Day event. Here are some ideas. Then, post pictures of your event on social media.
Follow Rare Disease Day on social media and stay informed.
If you live near Washington D.C. or attending Rare Disease Week, register to attend Rare Disease Day at the National Institutes of Health on February 28.
Make a donation to a rare disease organization (like Cure CMD!) or host a fundraiser to fund important research for rare disease.
How will you show your stripes this February 29th? Share your ideas and story in the comments below or by emailing Lani Knutson.