SPEAKERS & TOPICS
David Weinstein, MD, UCONN
Medical Advocacy and Clinical Trials - "Primer on Clinical Trials in the Rare Disease Population: What every participant must understand"
Karen Volle, New England Regional Genetics Network (NERGN)
How I Came to Work with a Regional Genetics Network (and what I learned along the way)
Michele Spencer-Manzon, MD, Yale-New Haven
Genome testing - Ethical and Practical Issues
Ed Kloza MS, CGC, New England Regional Genetics Network (NERGN)
How to Prepare for Your Geneticist App
Lisa Deck, RNE Committee Member, Founder of Sisters@Heart
Legislative Advocacy - Legislation Action Tips 101
Annette Hines Esq, Special Needs Law Group of Massachusetts
Legal Advocacy
Alan “Pendo” Pender; Camp Director - Hole in the Wall Gang Camp
Curt Lueker, Founder and President of myTEAM TRIUMPH Connecticut Chapter - Team Triumph
Seth Rotberg - Our Odyssey Resource Panel
Julie Bolduc DeFilippo, MSW, LCSW - Caregiver Burdens and Findings