RDD Speaker Series — Rare New England
Speakers at the 2020 RDD Series introducing their talk to the crowd.

Rare Disease Day Speaker Series

During the weeks around Rare Disease Day…

 

… RNE arranges for patients and/or family members to speak to medical audiences at major teaching hospitals, medical schools, and genetic counseling programs around New England. The presentation topics include any combination of the following possibilities: the diagnostic journey, living with the disease, coping strategies, challenges in the healthcare and/or educational systems, and others.

At each event, the patient presentation is preceded by a brief clinical overview of the disease by a geneticist to ensure that the audience has a medical foundation about the condition.

These sessions provide the medical community the chance to see patients with disorders they might not otherwise see. This opportunity also makes it more likely that they will recognize such patients in the future.

 


Meet Our Speakers

 

 RDDSS 2024

 
 

Speaker: Samuel Frank, MD

Beth Israel Deaconess Medical Center

 
 
Speaker: Jacklyn Omorodion, MD

Attending Physician at Boston Children's Hospital in the Division of Genetics and Genomics

 
 

Speaker: Robert Gensure, MD

Pediatric Endocrinology Specialist in Dartmouth Hitchcock Medical Center in NH

 
 

Speaker: Christopher Duggan, MD

Pediatric Gastroenterologist and Nutrition Physician at Boston Children’s Hospital

 
 
Speaker: David Weinstein, MD

Consultant, Weinstein Rare Disease and Clinical Development Consulting, LCC

Visiting Professor, University of Connecticut School of Medicine

Acting Chief Medical Officer, Grace Science, LLC.

 

SPONSORS

Thank you New England Regional Genetics Network for supporting the

Rare Disease Day Speaker Series!

PLATINUM

SILVER

RDDSS 2023

 
Headshot of Mark Korson, MD
Host: Mark Korson, MD

RNE Board Member

 
 
Headshot of Timothy Lukovits, MD
Speaker: Timothy Lukovits, MD

Medical Director of the Cerebrovascular Disease and Stroke Program, Dartmouth-Hitchcock Medical Center

 
 
Headshot of Samuel Frank, MD

Speaker: Samuel Frank, MD

Beth Israel Deaconess Medical Center

 
 
Headshot of Philip L Pearl, MD

Speaker: Philip L. Pearl, MD

Director of Epilepsy and Clinical Neurophysiology, Boston Childrens Hospital; William G. Lennox Chair and Professor of Neurology, Harvard Medical School

 
 

Institutions

The Rare Disease Day Speaker Series will take place at the following institutions this year:

  • Brandeis University

  • Yale New Haven Medical Center

  • University of New England

  • Tufts University

  • Bay Path University

  • MGH Institute of Healthcare Professionals

  • Boston University

  • University of Vermont Medical

  • Hasbro Children's Hospital

  • Harvard Medical School

 
Sponsors

Thank you New England Regional Genetics Network for supporting the Rare Disease Day Speaker Series!

 
 

Platinum Sponsors

 
 

Gold Sponsors

 
 

Silver Sponsors

 
 

 RDDSS 2022

January - March, 2022

 
 
 
 
Host: Mark Korson, MD

RNE Board Member

 
 
Speaker: Samuel Frank, MD

Beth Israel Deaconess Medical Center

 
 
 

Institutions

The RDD Speaker Series took place at the following locations this year:

  • Brandeis University

  • Hasbro Children’s Hospital

  • University of New England

  • Yale New Haven Hospital

  • MGH Institute

  • Harvard Medical School

  • University of Vermont Medical Center

  • Boston University

  • Tufts University

  • BayPath University

  • Dartmouth-Hitchcock Medical Center

  • University of Connecticut

 
 
 
Sponsors

Many thanks to all of our sponsors.

 
 
 
 

 

 RDDSS 2021

January - February, 2021

 
 
 
 
Host: Mark Korson, MD

RNE Board Member

 
 
Speaker: Timothy Lukovits, MD

Medical Director of the Cerebrovascular Disease and Stroke Program, Dartmouth-Hitchcock Medical Center

 
 

Institutions

The RDD Speaker Series took place at the following locations this year:

  • UVM Medical Center (CME Pedi Rounds)

  • Tufts University (Non-CME Medical Students)

  • Brandeis University (Non-CME GCs)

  • University of NE (Non-CME Medical Students)

  • BayPath (Non-CME GCs)

  • Yale-NH Medical Center (CME Genetics Rounds)

  • Hasbro Children's Hospital (CME Grand Rounds)

  • UVM Medical Center (CME Medical Rounds)

  • Dartmouth-Hitchcock Medical Center (CME Pediatric Seminar)

  • Boston University Genetic Counseling (Non-CME GCs)

  • MGH ICP (Non-CME GCs)

 
Sponsors

Many thanks to all our sponsors.

 
 
 

 

 RDDSS 2020

 
 
 
 
Host: Mark Korson, MD

RNE Board Member

 
 
Speaker: Timothy Lukovits, MD

Medical Director of the Cerebrovascular Disease and Stroke Program, Dartmouth-Hitchcock Medical Center

 
 

Institutions

The RDD Speaker Series took place at the following locations this year:

  • Brandeis University Genetic Counseling Program (Non-CME)

  • Yale-New Haven Medical Center

  • MGH Institute of Health Professions Genetic Counseling Program (Non-CME)

  • Tufts University School of Medicine (Non-CME)

  • Dartmouth-Hitchcock Medical Center

  • University of Vermont Medical Center

  • Boston University School of Medicine Genetic Counseling Program (Non-CME)

  • Bay Path University Genetic Counseling Program (Non-CME)

  • University of New England College of Osteopathic Medicine

 
Sponsors

We are grateful to our sponsors for helping to make our educational programs possible:

 

 

 RDDSS 2019

January - April, 2019

 
 
 
 
Host: Mark Korson, MD

RNE Board Member

 
 
Speaker: Dr. Amel Karaa

Massachusetts General Hospital

 
 

Institutions

The RDD Speaker Series took place at the following locations this year:

  • Brandeis University Genetic Counseling Program (Acute Intermittent Porphyria)

  • Tufts University School of Medicine (Fabry Disease)

  • Yale-New Haven Medical Center (Pompe Disease)

  • University of New England (Metabolism Clinic)

  • Rhode Island Hospital (Acute Intermittent Porphyria)

  • Dartmouth-Hitchcock Medical Center (Very long-chain acyl CoA dehydrogenase deficiency)

  • Boston University School of Medicine Genetic Counseling Program (Barth Syndrome)

  • University of Vermont Medical Center (Barth Syndrome)

  • Bay Path University Genetics Counseling Program (Tango II Disease)

 
Sponsors

We are grateful to our sponsors for helping to make our educational programs possible:

 

 

 RDDSS 2018

 

February - May, 2018

 
 
 
Host: Mark Korson, MD

RNE Board Member

 
 

Institutions

The RDD Speaker Series took place at the following locations this year:

  • Dartmouth-Hitchcock Medical Center (Barth syndrome)

  • Yale-New Haven Medical Center (erythropoietic protoporphyria)

  • University of Vermont Medical Center (acute intermittent porphyria)

  • Boston University School of Medicine Genetic Counseling Program (Fabry disease)

  • Brandeis University Genetic Counseling Program (Barth syndrome)

  • Newton-Wellesley Hospital (Hurler Disease, MPS Type 1)

 
Sponsors

We are grateful to our sponsors for helping to make our educational programs possible:

 

What is Rare Disease Day?

Rare Disease Day (RDD) is observed on the last day of February each year with the purpose of spreading awareness of the ramifications faced by those who live and work with the approximately 7000 rare diseases now recognized. Combined, more than 30 million adults and children in the United States (about 10% of the population) are affected by a rare disease. To find out more about RDD visit rarediseaseday.org.