Tag: Rare Disease Day 2018

EVERY DAY I HOPE YOU FEEL LOVED, SEEN, ACCEPTED AND PART OF A COMMUNITY. This was the first time our family, together with our community, celebrated Rare Disease Day. We celebrated in honor of our daughter, Juliet, who has Okur-Chung Neurodevelopmental Syndrome (“OCNDS”), an ultra rare genetic disorder. This celebration documented our huge shift...

    2/28 is Rare Disease Day We are officially Friends of Rare Disease Day. We are having our first event to celebrate Rare Disease Day and bring awareness to OCNDS in California.  ...