Understanding
Okur-Chung Neurodevelopmental Syndrome
Giving Tuesday is November 30th!
No Family Walks Alone
"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?
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?
Double Your Support for OCNDS research
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!
Joan and Charlie Davis are matching gifts up to $50,000. Act now to fund twice as many life-changing OCNDS research programs!