What is Rare Disease Day?
Rare Disease Day is the official international awareness-raising campaign for rare diseases. Rare Disease Day takes place on the last day of February each year. This year it is Sunday, February 28th.
What is the purpose of Rare Disease Day?
The main objective of the campaign is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.
Why bring awareness to Rare Disease?
There are over 300 million people worldwide living with a rare disease. Together across borders, and across the 6000+ rare diseases we work towards more equitable access to diagnosis, treatment, care and social opportunity.
The key message for Rare Disease Day 2021 is:
Rare is MANY worldwide.
Rare is STRONG every day.
Rare is PROUD everywhere.
What is the Foundation doing this year for Rare Disease Day?
This year we are launching an online campaign (due to COVID restrictions we are not having an in person event). We will feature stories from our families. We will use infographics to bring awareness to Rare Disease and OCNDS using social media, and feature quote graphics from our families that relate to the Rare Disease Day 2021 Campaign. On Sunday, February 28th, we also are hosting an interactive live Zoom event for families from around the world. Details to follow.
How can you participate? There are endless ways to participate. Here are a few ideas:
1. Write a brief story or a poem about what it means to raise a rare child or what it means to have someone rare in your life. Please send before rare disease day to info@csnk2a1foundation.org
For examples of stories written by OCNDS families on Rare Disease Day: https://www.csnk2a1foundation.org/we-had-no-idea-by-amber-reynolds/ https://www.csnk2a1foundation.org/i-challenge-you-by-melissa-burnham/
2. You could create a piece of art or a short film that represents the themes of Rare Disease Day:
Examples are:
https://www.youtube.com/watch?v=JV6e0Pp2b0E&feature=emb_title https://www.csnk2a1foundation.org/art-brings-community-together-for-rare-disease-day/
3. Share a photo with painted hands on social media using #RareDiseaseDay and tag @rarediseaseday #csnk2a1 #ocnds @csnk2a1
4. Share a photo with your foundation shirt, bag or mug on social media using #RareDiseaseDay and tag @rarediseaseday #csnk2a1 #ocnds @csnk2a1 or get creative and make something that represents rare disease day to you (cookies in the shape of a hand decorated different colors etc)
5. Change your Facebook or twitter profile and add Rare Disease Day logo to your profile. To add a frame to your profile picture on Facebook:
6. Starting February 21st, the Foundation will begin a rare disease day awareness campaign that will last the entire week. Please share and like the foundation’s content on rare disease day on your social media accounts including Facebook, Twitter, Instagram and Linkedin.
Thank you for helping turn Hope Into Action!
We are focused on finding a cure for Okur-Chung Neurodevelopmental Syndrome and ensuring affected individuals have the opportunities and supports necessary for happy and full lives. CSNK2A1 Foundation is operated and funded through a committed team of volunteers, advocates and researchers.
We are a 501(c)(3) non-profit organization. EIN #82-4220939.
© 2023 CSNK2A1 Foundation
1929 Van Ness Avenue
San Francisco, CA 94109
(415) 483-2488
The information provided is not intended to be a substitute for professional medical advice, diagnosis or treatment. Never disregard professional medical advice, or delay in seeking it, because of something you have read on this website. Read more...
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