The Rare Action Network℠, powered by the National Organization for Rare Disorders (NORD), serves to connect and empower a unified network of individuals and organizations with tools, training and resources to become effective advocates for rare diseases through national and state based initiatives across the United States. We stand for equitable access to timely diagnosis, treatment and care for every person impacted by a rare disease.
our mission is to
connect and empower
a unified network of
people and organizations
with tools, training,
to become effective
advocates for rare diseases
TAKE ACTION to #ProtectPatientsNow
All rare disease advocates are needed to call, email, and message their Senators and urge them to vote no on the Better Care Reconciliation Act (BCRA)! The BCRA would be devastating to individuals with rare diseases. The time is now to take action and urge your Senators to vote no on the BCRA. Each and every action makes an impact. We need you to utilize the resources below to make your voice heard and tell Senators that this is unacceptable for rare disease patients.
State Policy Report Card
NORD’s second annual State Policy Report Card serves as an evaluation of state progress in implementing policies pertinent to the rare disease community. With it, NORD hopes to provide a road map to the rare disease community of where each state can improve and, ultimately, push forward the discussion on rare disease public policy. The 2016 State Report Card provides an update on each of the policy categories from the 2015 report as well as several new issues that we believe are pertinent to the rare disease community. The new additions are as follows: Biosimilar Prescriber Communication, Step-Therapy Protection and Rare Disease Advisory Councils.
State Ambassador Program
This program was developed by NORD for volunteer state ambassadors to establish and build a strong grassroots network of rare disease advocates to help drive advocacy for increasing awareness of rare diseases and the challenges faced by individuals and their families. Ambassadors help achieve these goals by leading advocacy efforts in their state and local communities. They do this by building a strong grassroots network of rare disease advocates within their state and collaborating with other advocates on advocacy, awareness and educational outreach programs.
President Obama Signs Advancing Hope Act
September 30, 2016
Washington, D.C., September 30, 2016 – Today, President Obama signed the Advancing Hope Act (S. 1878), extending the Rare Pediatric Disease Priority Review Voucher (PRV) program until December 31. “On behalf of the 15 million children with rare diseases, we thank the President for signing the Advancing Hope Act so that some of our most vulnerable […]
Become a rare advocate today to unlock resources to connect with other members of the rare disease community within your state, attend local events, meet and build relationships with key decision-makers and opinion leaders, and receive breaking news and updates on Calls to Action.
- Join #RareAction in the Carolina's this September for FREE educational advocacy luncheons https://t.co/z87b59sRig Hope to see you there!
- 2day until 1pm CST Oklahoma State Ambassador @AGPAT2CGL hosting a table at @MetroLibraryOK talking rare disease & O… https://t.co/Ty0cJfQZ6l
- @RareDowsjones @RareDiseases Visit https://t.co/JLecMQdZiC and click join 😁
- RT @RareDiseases: Check out these stories from #raredisease advocates like you. Send your video message in 2 help #ProtectPatientsNow: http…
Featured Advocate Stories
Rare Action Road Tour, Tallahassee
July 28, 2015
Greetings from Tallahassee, As Einstein famously postulated, time is relative. I will make use of this fact to take you back in time to my visit to Tallahassee, Florida (schedules prevented our advocate and me from posting a few days ago). I like Tallahassee, it is one of few state capitals with the vibe of […]
Rare Action Road Tour, Denver
July 27, 2015
Greetings from Denver, As the road tour heads further west, the distances between stops grow longer and longer. More time in the car means less time to blog. But, 10 hours and 632 miles later I made it to Denver. It was somewhat of a tedious drive with nothing much to gaze at, however, the payoff was worth it; […]