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.

More information about Rare Disease Day can be found here and here.

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 will be hosted across New England!

MassBio will host 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 will host an event, "Bridging Health and Social Care", in North Haven, CT on February 27, 2019

(Stay tuned for more NE RDD events!)
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!
MassBio Celebrates Rare Disease Day

February 28, 2019
Omni Parker House, Boston, MA
Register Today!

Every year, MassBio celebrates Rare Disease Day by bringing together nearly 300 industry stakeholders to elevate public understanding of rare diseases and call attention to the special challenges people with these ailments face.

The event convenes patient organizations, government agencies, medical researchers, life sciences companies and patients to share stories and recognize the great work being done in Massachusetts and beyond to provide new treatments and cures for diseases that affect nearly 30 million Americans.

Click here to register!

Patient Panel: Supporting Patient Well-being Beyond Outcomes

Networking Break

Industry Panel: Fulfilling our Social Contract for the Whole Patient