RNE Honors Rare Disease Day Speaker Series 2020
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 includes 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.
We are grateful to our sponsors for helping to make our educational programs possible!
Platinum Sponsors

  • Brandeis University Genetic Counseling Program (MA)*
  • Yale-New Haven Medical Center (CT)
  • MGH Institute of Health Professions Genetic Counseling Program (MA)*
  • Tufts University school of Medicine (MA)*
  • Dartmouth-Hitchcock Medical Center (NH)
  • University of Vermont Medical Center (VT)
  • Boston University School of Medicine Genetic Counseling Program (MA)*
  • Bay Path University Genetic Counseling Program (MA)*
  • Hasbro Children's Hospital (RI)

*Non-CME Presentations​
2020 Speaker Series Locations
Gold Sponsors
Silver Sponsors
2020 ​Rare Disease Focus
Very Long Chain Acyl CoA Dehydrogenase Deficiency 
X-linked Adrenoleukodystrophy
 Fabry Disease
Moyamoya Disease
Urea Cycle Disorder
Acute Intermittent Porphyria
 Barth Syndrome
Dr. Mark Korson is an RNE Board Member and Founder of the Rare Disease Day Speaker Series. He is currently Director of Physician Support and Director of Education at VMP Genetics, and co-directs the North American Metabolic Academy. He is a clinical biochemical geneticist, focusing on the development of a telehealth approach to metabolic care (helping physicians with diagnosis and management), and promotes education as a way of addressing the current workforce issue in metabolic medicine.
Click here to review his profile
Meet our Hosts
Meet Dr. Lukovitz, who will be presenting an overview about Moyamoya Disease.

Timothy G. Lukovits, MD
Clinical Neurologist Medical Director, Cerebrovascular Disease and Stroke Program, Dartmouth-Hitchcock Medical Center