Location TBA, October 24th, 2020. Rare New England will host their annual “Improving Health Care Experiences in the Rare Disease Community with Information and Support”, and is for patients and families to obtain information about services and resources available to the rare disease community to help obtain an improved life.
* More information will posted about workshops and speakers in Spring 2020.
For more information about registration and fees, visit rwww.rarenewengland.org/RNE-Conference-2020.html or contact 508-699-4035 Info@rarenewengland.org
2019 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), “Genetics Education Materials for School Success (GEMSS): School Can Be a Great Experience for Everyone!”
- Carrie Woodcock, Maine Parent Federation, “Parent Advocacy – Finding Your Voice to Meet Your Child’s Needs”
- Leah Burke MD, Clinical Geneticist, University of Vermont Medical Center, “Direct to Consumer Testing in Genetics: The Good, the Bad, and the Ugly”
- Rosemarie Smith MD, Clinical Geneticist, Maine Medical Center, “Telegenetics in Maine”
- Mark Korson MD, Clinical Geneticist, Director of Physician Support and Director of Education at VMP Genetics, Founding Board Member of RNE, “I teach, but You Teach Better”
- 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”
- “Promoting Better Life Quality with Helpful Resources” – John Novack (Inspire), Amy Camerlin (Angel Flights), Annette Hines (Special Needs Law Group of Massachusetts)