"Nothing about Rare Disease is simple - not the diagnosis, not the daily care, not the long term." For #GivingTuesday, we are highlighting the power of connection when living with a rare disease.
Every rare disease family has a unique story to tell about their rare disease journey. On average, it takes 7 grueling years for a family to receive a diagnosis. OCNDS takes a toll on families financially, emotionally, spiritually, and mentally. Rare life can be extremely hard, isolating, and heartrending.
Finding a community can make all the difference on this rare disease journey. It is life-changing when someone understands your rare disease journey. Part of our mission is to foster connection and community for OCNDS families. We do this through annual meetings, monthly family zoom calls, webinars, and peer support.
On this #GivingTuesday, will you help us find a cure for OCNDS and ensure no family walks alone on this journey?
Time is of the essence. We need to find treatments or a cure for those living with OCNDS. From November 30th - December 31st, your gift will have DOUBLE the impact!
Joan and Charlie Davis are matching gifts up to $50,000. Act now to fund twice as many life-changing OCNDS research programs!
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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