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.
Downloadable Hurricane Harvey Emergency Relief Resources
August 31, 2017
Hurricane Harvey has left thousands rid of their belongings and forced out of their homes. For individuals living with a rare disease, the impact of such natural disasters can be even more detrimental. Together, NORD staff worked with our Texas Rare Action Network State Ambassador, Debbie Skolaski to create the Hurricane Harvey Emergency Relief Resources packet, a list of emergency […]
Make Your Voice Heard During NORD’s Days of Action
July 26, 2017
Senate in Deliberation TODAY! Yesterday, the Senate voted 51 to 50 to move forward with debate on repealing and replacing the Affordable Care Act (ACA). This is concerning because every proposal put forward publicly so far does not adhere to our Principles for Health Coverage Reform. Following this vote to move forward, the Senate considered a […]
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.
- Its time for rare advocates 2 become Vito Corleone and form the Advocacy mafia! - Vanessa Puopolo, CA #RareAction @RareDiseases #NORDSummit
- OR, MN, VA, CA #RareAction Ambassadors speaking on the importance of state based advocacy at #NORDSummit https://t.co/2796OQQmii
- Great #RareAction Leadership meeting today with our Ambassadors and Community Engagement Liaisons to kick off the… https://t.co/Y65UCQEOvB
- Great interview our Virginia State Ambassador Jana Monaco did for Newborn Screening Awareness Month https://t.co/FF95iBCn8e
Featured Advocate Stories
Being Named State Ambassador
August 23, 2017
To help drive the efforts of the Rare Action Network℠, NORD launched the State Ambassador Program. State Ambassadors are volunteers in a leadership position responsible for establishing and building a strong grassroots network of rare disease advocates within their state to help increase awareness of rare diseases and the challenges patients and their families face. […]
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 […]