Home   |   Donate   |   Industry   |   Print Page   |   Your Cart   |   Sign In   |   Join Now
Keyword Search
Rare Disease Day 2020

Rare Disease Day was celebrated all over the world on February 29, 2020 (Leap Day!).

 

 
On February 27, representatives from the Oley Foundation, the National Organization for Rare Disorders (NORD), and other groups celebrated at the New York State Capitol with a Rare Disease Day Resolution Hearing and Advocacy Day, hosted by NORD’s NY Rare Action Network (RAN). Approximately thirty people and various organizations from around the state gathered to celebrate the resolution, network, and advocate for legislation that affects the rare disease community.
Visit www.rarediseases.org/rare-disease-day-2020-
advocacy-events-recap to learn
about Rare Disease Day celebrations held
throughout the United States.
 

On February 29, Rocket Pharma, NYC, in partnership with the RTW Charitable Foundation, hosted a Rare Disease Day event in New York City themed on the 1920s, when ground-breaking medicines including penicillin and insulin were discovered. The evening providedan opportunity to learn more about rare diseases today, and the ongoing need for newtreatment options. It was full of speakers, crafts, food, networking, and music, and endedwith attendees taking a short cab ride to view the Empire State
Building, which was lit up in pink, blue, purple,
and green—the colors of the rare disease movement.


This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.

 

Updated in 2015 with a generous grant from Shire, Inc. 

 

This website was updated in 2015 with a generous grant from Shire, Inc. This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.
Membership Management Software Powered by YourMembership  ::  Legal