The 2016 CDG Family Conference was organized in collaboration with CDG CARE and the Sanford Burnham Prebys (SBP) Medical Discovery Institute. The conference was held February 27-29th in Del Mar, CA. It featured 15 captivating presentations from experts on numerous aspects of CDG and included a diverse panel of clinical, investigational, translational (therapeutic) and community experts from across the United States.
The event was strategically organized to build upon the events leading up to RARE Disease Day 2016, specifically in collaboration with the SBP Seventh Annual Rare Disease Day Symposium: Human Glycosylation Disorders. Through this partnership, an inclusive and collaborative community infrastructure was developed where medical professionals and 27 families (6 of them representing NGLY1 patients) united to support and enhance CDG research, knowledge, therapeutic and alternative treatment strategies.
The conference kicked off with a unique opportunity for families to participate in a 3-hour Doc-Is-In session comprised of small, intimate groups with CDG expert physicians and researchers to ask questions and discuss the CDG issues most important to families. Throughout the full day of conference sessions professionals presented educational topics encompassing intellectual disabilities, hormonal abnormalities, dietary therapies and the diverse clinical spectrum of children, adolescents and adults diagnosed with CDG. Families learned the importance of and strategies on how to cope with CDG from the parental, sibling and extended family perspective. The conference presentations also provided an opportunity for families to hear from a panel of therapeutic experts from the fields of occupational therapy, physical therapy and speech therapy. In addition to learning tips on how to embed therapy activities into everyday life, speakers provided an extensive overview of alternative therapies and cutting edge therapeutic treatments for children and adolescents living with physical, developmental and sensory disabilities.
All conference sessions were recorded and the post-conference video program can be viewed on the CDG CARE YouTube Channel. The next family conference will be held in 2018.