RNE Honors Rare Disease Day Speaker Series 2019
RNE Honors Rare Disease Day Speaker Series 2019 - sponsors
Dr. Mark Korson is an RNE Board Member. 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.
Last year's series was a great success as we visited 6 academic facilities!
For 2019, we are bringing educational opportunities to several several new venues across the New England area:
RNE is fortunate to have world-renowned geneticists within our organization who often provide their expertise through our events. Dr. Korson spearheads the Rare Disease Day Speaker Series which is based off his own experiences bringing in patients "Whereas physicians usually teach facts and discuss patient cases, patients (or family members) tell stories. People love stories. Story-telling is a far more effective teaching method than didactic teaching, and no one can discuss a disorder or describe in a more compelling way what it’s like to have a disease than someone who actually lives with that condition.".
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
Rare Disease Day Speaker Series 2019 Survey
If you have attended any of our 2019 rare disease day presentations and have not filled out out survey, please do so at your earliest convenience. Your feedback enables us to build better programming and is much appreciated! Click below to visit the simple 6 question survey here. Thank you!!
RNE visited Brandeis University Genetic Counseling Program on Jan 15th as our 1st RDDSS presentation of 2019!
Dr. Mark Korson provided an overview about Acute Intermittent Porphyria and Lina Rebeiz shared her experiences living with this disease.
On February 12th, we visited Yale - New Haven Hospital where Dr. Mark Korson and patient, Nick Parker, talked about Pompe Disease.
Our next Speaker Series Presentation was at the University of New England in Maine on February 19th. Dr. Mark Korson gave an overview of metabolism clinics to the medical students.
Our 2nd RDDSS presentation was on February 4th at Tufts Medical School. Dr. Mark Korson and patient, Paul Rakowski, shared about Fabry Disease, which is a lysosomal storage disorder.
On February 22nd we headed over to Rhode Island Hospital with Dr. Mark Korson and Lina Rebeiz to share about Acute Intermittent Porphyria
We visited Dartmouth-Hitchcock Medical Center on February 25th, where Dr. Mark Korson and Tasia Rechisky presented about Very long chain acyl CoA dehydrogenase deficiency.
The Boston University Genetic Counseling Program hosted us on February 27th where Dr. Amel Karaa and patient/caregiver representative, Susan McCormick, talked to the students about Barth Syndrome.
Also on February 27th, Dr. Mark Korson presented on Barth Syndrome at the University of Vermont Medical Center. Kate Michener shared her family's experience with Barth Syndrome.
After being snowed out in early March, RNE finally had the pleasure of presenting at BayPath's Genetic Counseling Program on April 24, 2019! Dr. Mark Korson provided an overview of Tango II and Kasha Morris shared her experiences with the disease.