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.
NORD Issues Statement in Response to Proposed Repeal of the Orphan Drug Tax Credit (ODTC)
November 3, 2017
Washington, D.C., November 2, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement in response to the release of the Tax Cuts and Jobs Act, and the proposed repeal of the Orphan Drug Tax Credit (ODTC): “Today, the House Ways and […]
New Study Examines Use and Cost of Orphan Drugs
October 18, 2017
Orphan Drugs Account for Only 7.9% of Pharmaceutical Spending in the U.S. Washington, D.C., October 17, 2017—Orphan drugs accounted for only 7.9% of total drug sales in the U.S. in 2016, according to a study issued today by the QuintilesIMS Institute. The study, commissioned by the National Organization for Rare Disorders (NORD), analyzed the role of the […]
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.
- #SaveOrphanDrugs for 30M Americans w/ #rarediseases who rely on future development of #OrphanDrugs: https://t.co/fy8dYJayKJ
- Minnesota #RareAction advocates came together today to connect with other rare advocates and learn about the propos… https://t.co/zsdUsOmno0
- Great day in #Minneapolis for #RareAction advocacy luncheon learning the key issues of whats happening in MN and ho… https://t.co/s8qkVp3TqM
- We are working with patients across MA to pass #steptherapy reform! Click here to join us! #HB492 #SB551 https://t.co/c4h2Evj8qn
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 […]