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Improving Health Care Experiences in the Rare Disease Community

Saturday, October 26, 2019
8:00 am5:00 pm
DoubleTree by Hilton 363 Maine Mall Road South Portland, ME 04106
Improving Health Care Experiences in the Rare Disease Community

Our annual conference will be held in Portland, Maine this year. Come join us for a great day of learning!

RNE's mission is to bring together New England patients, families and providers touched by rare and complex disorders. We offer educational opportunities, create awareness of available resources, and build foundations for support to improve patient quality of life.

There will be a wide range of speakers covering topics such as a review of diagnostic tools for rare diseases and what to expect from them; the unique aspects of rare disease trials, various sources of information about trials and the importance of clinical trials; navigating the school system with a rare disease; advocating for your child in the health care setting managing a complex disease in a complex health system, and much more!

Conference fees cover cost of Breakfast, Lunch and two snacks.

A child watch will be available. There will be games and other activities sure to keep the little ones entertained for the day!

There are limited patient/family scholarship opportunities for registration fees. Please complete form and send to

For more information on the event, to review agenda, or for an event flyer please visit our 2019 conference webpage

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 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"

Panel of Resources - John Novack, Inspire: TBA

Interested to exhibit? Please contact Julie@rarenewengland for fees and info.

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