Rare Disease Day 2019
RNE is gearing up to help spread awareness, provide education, and make connections that benefit the rare disease community and aligning with Rare Disease Day 2019.
RNE is organizing another year of "RNE Honors Rare Disease Day Speaker Series", will be participating on a panel at the rare disease day event organized by Massachusetts Biotechnology Council, and asking families to submit stories to be uploaded to our webpage, "Rare Share" that tell a story about living with rare and complex diseases.
Stay tuned for more info about events in the New England!.
Rare Disease Day celebrations were hosted across New England!
MassBio hosted an event, MassBio Celebrates Rare Disease Day", at the Omni Parker House, Boston, MA on February 28, 2019.
Quinnippiac Frank H. Netter School of Medicine hosted an event, "Bridging Health and Social Care", in North Haven, CT on February 27, 2019
Frank H. Netter MD School of Medicine at
Quinnipiac University
February 27th, 1PM to 4:30PM
Since 2015, the Frank H. Netter MD School of Medicine at Quinnipiac University has hosted Rare Disease Day, providing an opportunity for patients, family members and researchers to share their stories and promote education, awareness, and advocacy. The event has also become a powerful learning opportunity for students and professionals regarding the unique needs of individuals affected by rare disorders.
The keynote speaker will be Dr. Monkol Lek from the Department of Genetics at Yale University School of Medicine. Dr. Lek’s research focuses on the identification of genes associated with undiagnosed neuromuscular disorders including the various forms of limb-girdle muscular dystrophy (LGMD). LGMD is a rare muscle disease that leads to progressive muscle weakness and wasting. It is an honor to have Dr. Lek, who is himself affected by LGMD, present for Rare Disease Day 2019, being an incredible source of knowledge, advocacy, and inspiration. Dr. Lek’s presentation will be followed by additional interprofessional speakers, a patient panel, and poster session.
Click here for location and much more info!
