Rare Disease Day 2020 Advocacy Events Recap
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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.
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.
Wyatt, Coats Plus Syndrome, February 4, 2020
We wanted to share this story because I want anyone else out there with a child who has this to know they aren’t alone. We also want to share our son. What we want the world to know is that he is a child, not defined by his syndrome, but defined by the person he has become and is. […]
Zuhriah, Pyknodysostosis, February 4, 2020
For sure, I have been better, but I accept what I have now and moving on with it while keeping my hope and faith intact...I really hope that we can have more medical research and discoveries on PKND. […]
Tucker, Amyotrophic Lateral Sclerosis, February 4, 2020
"If I could show you how to die or, more importantly, how to live in the face of death, to show you that you don't have to be afraid of anything, then I would not have to be disgusted to have lived. Then I could be proud. For some reason, that was important." […]
Gia, Sickle Cell Disease, February 4, 2020
By using my voice and story along with Gia’s story, we are making sure that Nevada constantly hears about SCD and how it affects people living in this state and world wide. […]