“Improving Health Care Experiences in the 
Rare Disease Community”

Confirmed Speakers and Topics

Robert Burgess PhD, Jackson Laboratory, "Rare Genetic Diseases: Moving Beyond Diagnosis to Treatments Using Gene Therapy"

Karen Volle, New England Regional Genetics Network (NERGN), "Genetic Education Material for School Success"

Carrie Woodcock, Maine Parent Federation, "Advocating for Your Child with Special Health Care Needs"

Leah Burke MD, Clinical Geneticist, University of Vermont Medical Center, "Direct to Consumer Genetic Testing"

Rosemarie Smith MD, Clinical Geneticist, Maine Medical Center, "Telehealth/Telegenetics"

Mark Korson MD, Clinical Geneticist, Director of Physician Support and Director of Education at VMP Genetics, Founding Board Member of RNE, TBA

John Campbell, Clinical Development Director, Pharma, Founding Board Member at RNE, "Rare Disease Clinical Trials"

Lisa Deck, Rare Disease Advocate and Patient, "Legislative Tips 101"

Panel of Resources - TBA
Stay tuned and keep watching for updates on agenda and registration opening!