Mar. 13, 2020
TOPIC: Featured News, Advocacy, Events, Rare Disease Day
Posted by Valaree DonFrancesco
In 2009, NORD was invited to join the official Rare Disease Day campaign, led internationally by EURODIS. Since then, NORD has been the official US sponsor of Rare Disease Day, driving the annual campaign in the states, hosting advocacy events across the country and bringing the rare disease community together to promote awareness and help improve the lives of over 25 million Americans living with rare diseases.
This year, patients, families, caregivers, medical professionals, NORD staff and other stakeholders participated in over 25 Rare Disease Day advocacy events in 23 states. Patients and families were able to connect with one another and educate the public and elected officials about the challenges they face and how they can make a difference in the lives of people impacted by rare disease.
Among the topics discussed at this year’s events was NORD’s 5th Edition State Report Card, which evaluates the states and Washington, DC on nine critical issues affecting the community. Check it out at rareaction.org/stateofthestates.
If you are interested in learning more about Rare Disease Day events in your state for 2021, be sure to join the Rare Action Network.
AR RAN Volunteer State Ambassador Tammy Jones and Community Engagement Liaison Kim McClellan with students from the Arkansas College of Osteopathic Medicine
Galia Spychalska with son Casper and NORD Associate Director of Advocacy Kristen Angell at Colorado state house event
Connecticut legislators rallying behind the rare community at Connecticut state house event
IL RAN Volunteer State Ambassador Maria Bellefeuille with Senator Don Harmon, President of the Illinois Senate
GA RAN Volunteer State Ambassador Beth Nguyen speaking at state house event
MI RAN Volunteer State Ambassador Sarah Daniels with advocates at state house event
Mississippi Governor Tate Reeves signing Rare Disease Day proclamation with advocates
NH RAN Community Engagement Liaison Krista Gilbert with her son at state house event
NJ RAN Volunteer State Ambassador Julie Raskin accepting Rare Disease Day proclamation from legislators at NJ State Museum
NORD Senior State Policy Analyst Rose Gallagher with Assemblymember John T. McDonald III and advocates
OH RAN Volunteer State Ambassador Charlene York speaking at Rare Disease Day event in Cleveland
Texas A&M Students for Rare chapter members at Rare Disease Day event in Sugarland, Texas
WI RAN Volunteer State Ambassador Danyelle Sun with advocates at state house event