Jason and Nola's Story in Honor of Rare Disease Day
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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. While each of the more than 7,000 rare diseases are unique, there are many commonalities that unite the rare disease community. In the spirit of raising the profile of the rare disease community at large and celebrating Rare Disease Day, this year NORD will promote specific ways that individuals, organizations and groups can show their stripes.
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This year, Rare Disease Day will look a little different here in the US as we connect virtually instead of in person due to the ongoing COVID-19 pandemic. There are many ways you can still Show Your Stripes® for rare diseases and make this day impactful and celebratory. One way is to help our community light up as many buildings and landmarks as possible in Rare Disease Day colors on or around February 28.
Learn more >The purpose of Rare Disease Day® is to harness the creativity and energy of the millions of people around the world with rare diseases – and the millions who care about and assist them – to raise awareness and generate action. Together we can accomplish that goal. For inspiration on how to get involved in Rare Disease Day, take a look at the examples of past events.
Bradley, Infantile Myofibromatosis, January 26, 2021
My son Bradley was diagnosed with infantile myofibromatosis when he was four months old. We noticed he had a large mass on his forearm and immediately called the pediatrician. […]
Olivia, Barakat Syndrome, January 25, 2021
My oldest daughter, Olivia, was recently diagnosed with Barakat syndrome (Gata 3 or HDR syndrome). Though she is eleven now, we have been battling the kidney disease part since birth and hearing loss since age five. […]
Tristan, Sickle Cell , January 24, 2021
I‘m so honored to be a part of this amazing campaign. Rare Disease Day is important to me because it’s a day when a spotlight is focused on people worldwide who are living with rare diseases that most people don’t even know exist. […]