More Info Coming Soon!

 *For more information on the FOD Community: https://fodsupport.org/
Ed Kloza MS, CGC

Ed Kloza is a genetics consultant to the New England Regional Genetics Network. He received his degree in Human Genetics and Genetic Counseling from Rutgers University, and has co-authored over 35 articles in the medical literature. 

Ed has extensive experience in genetic education of primary care clinicians and the general public. He is past president of the National Society of Genetic Counselors, past editor of Perspectives in Genetic Counseling, and served on the editorial board of the Journal of Genetic Counseling. He co-founded the American Board of Genetic Counseling, and received the Natalie Weissberger Paul National Achievement Award in 2000.

Speakers & Topics


David Weinstein, MD, UCONN 
Medical Advocacy and Clinical Trials

Karen Volle, New England Regional Genetics Network (NERGN) 
Genetics Education Materials for School Success (GEMSS): 
School Can Be a Great Experience for Everyone!

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

Promoting Better Life Quality with Helpful Resources
Rare New England's 2020 Conference Location


Hilton Hartford
315 Trumbull St.
Hartford, CT 06103


Hotel Accommodations at a block-rate are available through the Hilton RNE link here.


Rare New England Annual Conference 2020

“Improving Health Care Experiences in the Rare Disease Community”
​Lisa Deck

Lisa Deck is a Founder & Director of Sisters@Heart, a non-profit organization that improves the lives of those affected by heart disease and stroke. Lisa is a former Go Red for Women National Spokeswomen for the American Heart Association and currently serves as an Advocacy Board Member for the American Heart Association in Boston and Southern New England. Lisa also serves as a Global Ambassador, sharing her personal experience and patient expertise internationally.

Suffering her first three strokes twenty years ago, Lisa has been a patient activist and keynote speaker for the past two decades. Lisa lobbies at the local, state and Federal level for health policy development . She is a widely known advocate voice that inspires others and raises awareness of heart disease, stroke and Moyamoya disease.

In 2015, Lisa was diagnosed with Moyamoya Disease, a rare cerebrovascular disease, after an 18-year diagnostic odyssey. She underwent two brain bypass surgeries to restore blood flow to her brain. Since then, Lisa has become actively involved in rare disease advocacy, serving as a Board Member for the Moyamoya Foundation and a Committee member of Rare New England. On behalf of Rare New England, Lisa produces and hosts a local cable show, The World of Rare Disease. Lisa lives in North Attleboro, Massachusetts with her husband and two children.