Board Member Andy Speirs and his wife, Virginia, represented Koolen-de Vries Syndrome Foundation at the Global Genes Patient Advocacy Summit. They were able to network and make great contacts in the rare disease community while sharing information about KdVS and a link to our new video (https://youtu.be/6mqYyJcQY50).
We had a wonderful time attending the 2019 Global Genes Patient Advocacy Summit in San Diego, CA! We made some wonderful contacts that will help move our efforts forward to treat KdVS. Most importantly, we learned we have an excelled Medical Advisory Board led by Dr. Koolen and Dr. de Vries who are already doing everything we learned at the Summit: build a community, let patients drive the research, and collaborate with other medical professionals. We are excited about the future for those living with KdVS!Andy Speirs, Koolen-de Vries Syndrome Treasurer