Lauren Kopsick has an eclectic background that includes a VP in banking, corporate marketing training and development, caregiver, small business consulting, call center management, volunteering, and board membership. She also co-founded the Richmond, VA, mixed pediatric/adult support group for The Crohn’s and Colitis Foundation. In 2015, as the mom to a kiddo with two rare
Geoff Case
Geoff is the digital editor at RARE Revolution Magazine, an independent, not-for-profit publication dedicated to elevating the voice of the rare disease community. Geoff worked in the education sector for 20 years, teaching in schools in the UK and overseas. He served as an examiner and co-authored a school textbook on English literature. Now, as
Richard Duncan, Executive Director
Richard Duncan is the Executive Director of the Universal Design Institute and the Better Living Design Institute in Asheville, North Carolina. Richard is a Planner who has spent over 35 years in the field of architectural and product accessibility and universal design in residential, public, and transportation environments as well as community design for constituencies
Rare Revolution Magazine
The Dash Alliance
Tino Mudarikwa
Cristina Skrypnyk, MD, PhD
M.D., PhD in Medical Genetics, European Board of Medical Genetics and Genomics certification; more than 40 postgraduate international training in cytogenetics, molecular cytogenetics, genetic and genomics counselling, member of reputed international genetics societies ; involved in medical genetics research,; dedicated volunteer of international genetic disorders patient’s organizations; strongly supports an ethical medical practice ; passionate advocator of
Ann Chivers
ASUK is a patient led, resourceful and dynamic charity providing information, support and advice for children and adults with Alström Syndrome, their families and loved ones and the professionals who work with them. We are a small and dynamic charity, hugely ambitious to make a difference to the lives of people with this ultra-rare condition.
Patricia Weltin
Patty Weltin is the CEO and Founder of the Beyond the Diagnosis. She is the mother of two children with Ehlers-Danlos Syndrome, a rare disease. Patty began working in this space by creating a new business model of working by state. She is from Rhode Island. Her award winning work in state-level advocacy grew to national advocacy efforts.
