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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

  • Samuel Frank, MD is the Director of Clinical Research Network Development and a movement disorder neurologist at Beth Israel Deaconess Medical Center (BIDMC), a teaching hospital for Harvard Medical School.

    Dr. Frank was the principal investigator for the Huntington Study Group (HSG) studies of deutetrabenzaine, First-HD and ARC- HD and a site investigator for many HD trials. He served as an investigator on the HSG executive committee and is the co-Chair of the HSG Executive Membership Committee. He was a member of the National Huntington Disease Society of America (HDSA) Board of Trustees and serves locally as the director of the HDSA Center of Excellence at BIDMC.

    Dr. Frank is the inpatient neurology consultant for the specialized Huntington’s Disease service at Tewksbury Hospital and the Chair of the Experimental Neurotherapeutics section of the American Academy of Neurology.

 
 
Speaker: Jacklyn Omorodion, MD

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

  • Dr. Omorodion received her doctorate of medicine from the George Washington University School of Medicine and Health Sciences in Washington, DC. Following this, she completed combined pediatrics residency training and clinical genetics fellowship training through the Boston Combined Residency Program and the Harvard Medical School Genetics Training Program, respectively.

    She is currently an attending physician at Boston Children's Hospital in the Division of Genetics and Genomics where she sees a wide spectrum of patients with genetic conditions. She is also an Instructor in Pediatrics at Harvard Medical School. Her primary research interest is in the ethical, legal, and social implications of rare disease treatment, specifically focusing on health disparities and inequities in clinical genetics.

 
 

Speaker: Robert Gensure, MD

Pediatric Endocrinology Specialist in Dartmouth Hitchcock Medical Center in NH

  • Dr. Robert Gensure is a pediatric endocrinology specialist in Dartmouth Hitchcock Medical Center in NH. He received his medical degree as well as Ph.D. in physiology from Tulane University School of Medicine and has been in practice for more than 20 years. Dr. Gensure strives to provide care that is inclusive and accessible. He is proud of the work done in the Diabetes Program.

    Dr. Gensure has experience treating conditions like Hypopituitarism, Growth Hormone Deficiency and Short Stature among other conditions at varying frequencies. Through individualized care plans and technology like pumps and monitors, they improve symptom control and reduce the burden on children and their families. Metabolic bone disease, in particular, is one of his long-standing areas of interest. Previous affiliations include Montefiore Medical Center and Tufts Medical Center.

 
 

Speaker: Christopher Duggan, MD

Pediatric Gastroenterologist and Nutrition Physician at Boston Children’s Hospital

  • Christopher Duggan, M.D., M.P.H. is a pediatric gastroenterologist and nutrition physician at Boston Children’s Hospital where he directs the Center for Nutrition (http://www.childrenshospital.org/nutrition). He is Medical Director of the Center for Advanced Intestinal Rehabilitation, one of the largest centers in the US for the care of children with intestinal failure/chronic diarrhea syndromes (http://www.childrenshospital.org/cair).

    In 2019, he was named Editor-in-Chief of the American Journal of Clinical Nutrition, one of the top-rated peer-reviewed journals in the field of nutrition. He is Samuel Meltzer Professor of Pediatrics and Director of the Division of Nutrition at Harvard Medical School, and a Professor in the Departments of Nutrition and Global Health and Population at the Harvard TH Chan School of

    Public Health. He has twice received the Physician Nutrition Specialist Award from the American Society of Nutrition, was the 2015 recipient of the Fomon Nutrition Award from the American Academy of Pediatrics. He is the course co-founder of the Advanced Integrated Science Course at Harvard Medical School “Nutrition, Metabolism and Lifestyle Medicine”.

 
 
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.

  • Following his graduation from Harvard Medical School, Dr. Weinstein did a residency, chief residency, and fellowship in pediatric endocrinology at Boston Children’s Hospital. He subsequently obtained a Masters in Clinical Investigation from Harvard and MIT, and became Director of the Glycogen Storage Disease Program at Boston Childrens.

    In 2005, Dr. Weinstein moved to the University of Florida where he directed the GSD Program and became a tenured professor. He moved to the University of Connecticut in 2017 where his team launched the world’s first gene therapy trial for glycogen storage disease.

    In 2020, he left the academic world to serve as the medical lead for the GM1 gangliosidosis and metachromatic leukodystrophy gene therapy trials at Passage Bio. He now serves as a consultant for rare disease clinical trials, and is the acting Chief Medical Officer for Grace Science, LLC. In 1989, he was named as one of the inaugural Goldwater Scholars.

    He is a former Jan Albrecht Award winner from the American Association for the Study of Liver Diseases, and he was the George Sacher Award winner from the Gerontological Society of America. In 2013, Dr. Weinstein was knighted in Poland and honored with the Order of the Smile international humanitarian award.

 

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

  • Dr. Korson advocates for innovation in medical education and clinical practice models as a response to the growing crisis in metabolic health care due to the shortage of clinicians available to serve this patient community. He co-founded in 2007 the North American Metabolic Academy, which has become an integral component of genetic resident training on this continent. Between 2007 and 2011, he founded and directed the Metabolic Outreach Service, based at Tufts Medical Center, serving five major teaching hospitals in the northeastern US without an on-site metabolic service. In 2017, Dr. Korson joined VMPGenetics in Atlanta as Director of Education and Director of Physician Support Services, a telehealth consulting practice that assists physicians in the care of their metabolic patients.

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

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

  • Dr. Timothy Lukovits grew up in a small rural town in upstate NY where his great-grand-parents started the first volunteer ambulance service. He attended Dartmouth College, obtained his medical degree at the University of Rochester, then completed his neurology residency at Dartmouth-Hitchcock Medical Center before completing a stroke and neurocritical care fellowship at Rush-Presbyterian St. Luke’s Medical Center in Chicago. He has been the Medical Director of the Cerebrovascular Disease and Stroke Program since 2002. He received the AHA Distinguished Leadership Award last in 2012. Under Dr. Lukovits’ leadership, DHMC recently received the American Heart Association/American Stroke Association's Get With The Guidelines®-Stroke Gold Quality Achievement Award. Dr. Lukovits also chairs the Northeast Cerebrovascular Consortium Subacute Care Work Group, is the medical director of the New Hampshire Stroke Collabortive and the Vermont Stroke Executive Steering Committee. Dr. Lukovits has visited and provided education at nearly every hospital in New Hampshire and Vermont and has brokered inter-facility protocols and agreements with multiple hospitals in our region. His recent research has focused on the use of simulation lab training for acute stroke, helicopter transport for acute stroke, and clinical trials involving carotid artery stenting, PFO closure, new thrombolytic agents and antiplatelet medication.ext goes here

 
 
Headshot of Samuel Frank, MD

Speaker: Samuel Frank, MD

Beth Israel Deaconess Medical Center

  • Samuel Frank, MD is a movement disorder neurologist at Beth Israel Deaconess Medical Center (BIDMC), a teaching hospital for Harvard Medical School. After completing his residency and fellowship at the University of Rochester, he joined the neurology faculty at Boston University from 2004 to 2015. Dr. Frank was the principal investigator for First-HD and ARC-HD and a site investigator for many HD (Huntington Disease) trials. He served as an investigator on the HSG executive committee. He was a member of the National HDSA Board of Trustee and locally serves as the director of the HDSA Center of Excellence at BIDMC. Dr. Frank is the inpatient neurology consultant for the specialized Huntington’s Disease service at Tewksbury State Hospital.

 
 
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

  • Phillip L. Pearl, M.D. is Director of Epilepsy and Clinical Neurophysiology at Boston Children’s Hospital

    and William G. Lennox Chair and Professor of Neurology at Harvard Medical School. Dr. Pearl, originally

    from Baltimore, attended Johns Hopkins University and Peabody Conservatory of Music and University

    of Maryland School of Medicine. He took his residency at Baylor College of Medicine in Houston and

    fellowship at Boston Children’s Hospital. He was Division Chief of Neurology at Children’s National

    Medical Center and Professor of Neurology, Pediatrics, and Music at the George Washington University

    School of Medicine until returning to Boston in January 2014. Dr. Pearl also is a faculty member of the

    Music and Health Institute at the Berklee College of Music in Boston. His major research interest is

    inherited metabolic epilepsies with specific focus on disorders of GABA metabolism. Dr. Pearl is Past

    President of the Professors of Child Neurology and the Child Neurology Society. He has authored over

    220 peer-reviewed manuscripts and over 150 chapters and reviews, written or edited five books

    including one translated into Chinese and another into Japanese, and produced two musical CDs, the

    first of which had its debut at Georgetown’s famous Blues Alley and supports the care of indigent

    children in the capital city, Washington, D.C.

 
 

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

  • Dr. Korson graduated in Medicine from the University of Toronto School of Medicine (1982), then completed a pediatric residency nearby at Toronto’s Hospital for Sick Children. After completing a fellowship in genetics at Boston’s Children's Hospital (1990), he became director of the Metabolism Clinic at Children's until 2000. He then transferred across town to Tufts Medical Center to become director of the Metabolism Service, as well as Associate Professor of Pediatrics at Tufts University School of Medicine, serving there until 2014.

    Dr. Korson advocates for innovation in medical education and clinical practice models as a response to the growing crisis in metabolic health care due to the shortage of clinicians available to serve this patient community. He co-founded in 2007 the North American Metabolic Academy which has become an integral component of genetic resident training on this continent. Between 2007 and 2011, he founded and directed the Metabolic Outreach Service, based at Tufts Medical Center, serving five major teaching hospitals in the northeastern US without an on-site metabolic service. In 2017, Dr. Korson joined VMP Genetics in Atlanta as Director of Education and Director of Physician Support Services, a telehealth consulting practice that assists physicians in the care of their metabolic patients.

 
 
Speaker: Samuel Frank, MD

Beth Israel Deaconess Medical Center

  • Samuel Frank, MD is a movement disorder neurologist at Beth Israel Deaconess Medical Center (BIDMC), a teaching hospital for Harvard Medical School. After completing his residency and fellowship at the University of Rochester, he joined the neurology faculty at Boston University from 2004 to 2015. Dr. Frank was the principal investigator for First-HD and ARC-HD and a site investigator for many HD (Huntington Disease) trials. He served as an investigator on the HSG executive committee. He was a member of the National HDSA Board of Trustee and locally serves as the director of the HDSA Center of Excellence at BIDMC. Dr. Frank is the inpatient neurology consultant for the specialized Huntington’s Disease service at Tewksbury State Hospital.

 
 
 

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

  • Dr. Korson graduated in Medicine at the University of Toronto School of Medicine (1982), then completed a pediatric residency nearby at Toronto’s Hospital for Sick Children. After completing a fellowship in genetics at Boston’s Children's Hospital (1990), he became director of the Metabolism Clinic at Children's until 2000. He then transferred across town to Tufts Medical Center to become director of the Metabolism Service, as well as Associate Professor of Pediatrics at Tufts University School of Medicine, serving there until 2014.

    Dr. Korson advocates for innovation in medical education and clinical practice models as a response to the growing crisis in metabolic health care due to the shortage of clinicians available to serve this patient community. He co-founded in 2007 the North American Metabolic Academy which has become an integral component of genetic resident training on this continent. Between 2007 and 2011, he founded and directed the Metabolic Outreach Service, based at Tufts Medical Center, serving five major teaching hospitals in the northeastern US without an on-site metabolic service. In 2017, Dr. Korson joined VMP Genetics in Atlanta as Director of Education and Director of Physician Support Services, a telehealth consulting practice that assists physicians in the care of their metabolic patients.

 
 
Speaker: Timothy Lukovits, MD

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

  • Dr. Timothy Lukovits grew up in a small rural town in upstate NY where his great-grand-parents started the first volunteer ambulance service. He attended Dartmouth College, obtained his medical degree at the University of Rochester, then completed his neurology residency at Dartmouth-Hitchcock Medical Center before completing a stroke and neurocritical care fellowship at Rush-Presbyterian St. Luke’s Medical Center in Chicago. He has been the Medical Director of the Cerebrovascular Disease and Stroke Program since 2002. He received the AHA Distinguished Leadership Award last in 2012. Under Dr. Lukovits’ leadership, DHMC recently received the American Heart Association/American Stroke Association's Get With The Guidelines®-Stroke Gold Quality Achievement Award. Dr. Lukovits also chairs the Northeast Cerebrovascular Consortium Subacute Care Work Group, is the medical director of the New Hampshire Stroke Collabortive and the Vermont Stroke Executive Steering Committee. Dr. Lukovits has visited and provided education at nearly every hospital in New Hampshire and Vermont and has brokered inter-facility protocols and agreements with multiple hospitals in our region. His recent research has focused on the use of simulation lab training for acute stroke, helicopter transport for acute stroke, and clinical trials involving carotid artery stenting, PFO closure, new thrombolytic agents and antiplatelet medication.

 
 

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

  • Dr. Korson graduated in Medicine at the University of Toronto School of Medicine (1982), then completed a pediatric residency nearby at Toronto’s Hospital for Sick Children. After completing a fellowship in genetics at Boston’s Children's Hospital (1990), he became director of the Metabolism Clinic at Children's until 2000. He then transferred across town to Tufts Medical Center to become director of the Metabolism Service, as well as Associate Professor of Pediatrics at Tufts University School of Medicine, serving there until 2014.

    Dr. Korson advocates for innovation in medical education and clinical practice models as a response to the growing crisis in metabolic health care due to the shortage of clinicians available to serve this patient community. He co-founded in 2007 the North American Metabolic Academy which has become an integral component of genetic resident training on this continent. Between 2007 and 2011, he founded and directed the Metabolic Outreach Service, based at Tufts Medical Center, serving five major teaching hospitals in the northeastern US without an on-site metabolic service. In 2017, Dr. Korson joined VMP Genetics in Atlanta as Director of Education and Director of Physician Support Services, a telehealth consulting practice that assists physicians in the care of their metabolic patients.

 
 
Speaker: Timothy Lukovits, MD

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

  • Timothy Lukovits

    Dr. Timothy Lukovits grew up in a small rural town in upstate NY where his great-grand-parents started the first volunteer ambulance service. He attended Dartmouth College, obtained his medical degree at the University of Rochester, then completed his neurology residency at Dartmouth-Hitchcock Medical Center before completing a stroke and neurocritical care fellowship at Rush-Presbyterian St. Luke’s Medical Center in Chicago. He has been the Medical Director of the Cerebrovascular Disease and Stroke Program since 2002. He received the AHA Distinguished Leadership Award last in 2012. Under Dr. Lukovits’ leadership, DHMC recently received the American Heart Association/American Stroke Association's Get With The Guidelines®-Stroke Gold Quality Achievement Award. Dr. Lukovits also chairs the Northeast Cerebrovascular Consortium Subacute Care Work Group, is the medical director of the New Hampshire Stroke Collabortive and the Vermont Stroke Executive Steering Committee. Dr. Lukovits has visited and provided education at nearly every hospital in New Hampshire and Vermont and has brokered inter-facility protocols and agreements with multiple hospitals in our region. His recent research has focused on the use of simulation lab training for acute stroke, helicopter transport for acute stroke, and clinical trials involving carotid artery stenting, PFO closure, new thrombolytic agents and antiplatelet medication.

 
 

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

  • Dr. Korson graduated in Medicine at the University of Toronto School of Medicine (1982), then completed a pediatric residency nearby at Toronto’s Hospital for Sick Children. After completing a fellowship in genetics at Boston’s Children's Hospital (1990), he became director of the Metabolism Clinic at Children's until 2000. He then transferred across town to Tufts Medical Center to become director of the Metabolism Service, as well as Associate Professor of Pediatrics at Tufts University School of Medicine, serving there until 2014.

    Dr. Korson advocates for innovation in medical education and clinical practice models as a response to the growing crisis in metabolic health care due to the shortage of clinicians available to serve this patient community. He co-founded in 2007 the North American Metabolic Academy which has become an integral component of genetic resident training on this continent. Between 2007 and 2011, he founded and directed the Metabolic Outreach Service, based at Tufts Medical Center, serving five major teaching hospitals in the northeastern US without an on-site metabolic service. In 2017, Dr. Korson joined VMP Genetics in Atlanta as Director of Education and Director of Physician Support Services, a telehealth consulting practice that assists physicians in the care of their metabolic patients.

 
 
Speaker: Dr. Amel Karaa

Massachusetts General Hospital

  • Dr. Amel Karaa is a board-certified physician in internal medicine and clinical genetics and the director of the lysosomal storage disorder and mitochondrial disease program at the Massachusetts General Hospital in Boston. She has received the 2013 United Mitochondrial Disease Foundation (UMDF) fellowship and is the president of the mitochondrial medicine society. Dr. Karaa conducts clinical research for both mitochondrial and lysosomal storage diseases as well as clinical trials.

 
 

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

  • Dr. Korson graduated in Medicine at the University of Toronto School of Medicine (1982), then completed a pediatric residency nearby at Toronto’s Hospital for Sick Children. After completing a fellowship in genetics at Boston’s Children's Hospital (1990), he became director of the Metabolism Clinic at Children's until 2000. He then transferred across town to Tufts Medical Center to become director of the Metabolism Service, as well as Associate Professor of Pediatrics at Tufts University School of Medicine, serving there until 2014.

    Dr. Korson advocates for innovation in medical education and clinical practice models as a response to the growing crisis in metabolic health care due to the shortage of clinicians available to serve this patient community. He co-founded in 2007 the North American Metabolic Academy which has become an integral component of genetic resident training on this continent. Between 2007 and 2011, he founded and directed the Metabolic Outreach Service, based at Tufts Medical Center, serving five major teaching hospitals in the northeastern US without an on-site metabolic service. In 2017, Dr. Korson joined VMP Genetics in Atlanta as Director of Education and Director of Physician Support Services, a telehealth consulting practice that assists physicians in the care of their metabolic patients.

 
 

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.