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
State Policy Report Card
In this third edition of NORD’s State Policy Report Card we are seeking to expand our analysis to more issues that affect the rare disease community while also providing a more targeted analysis of policies analyzed in previous editions of the report. In terms of the expansion, the 2018 report has grown to cover several emerging issues, such as the enactment of work requirements within Medicaid programs and state adoption of “Right-to-Try” laws.
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 on Increasing Use of CoPay Accumulator Programs in Health Plans
June 4, 2018
Washington, D.C., June 4, 2018 — The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement on the increasing use of copay accumulator programs in health plans: “Recently, a number of health plans have started implementing, what are broadly known as, ‘copay […]
Rare Disease Advocates Host a Save the Orphan Drug Tax Credit Rally
November 28, 2017
Patients speak out as Congress moves forward with a tax bill that would negatively impact individuals with rare diseases Washington, D.C., November 28, 2017 – Today, the National Organization for Rare Disorders (NORD) is hosting a Save the Orphan Drug Tax Credit Rally for the rare disease community in response to the tax reform bill being debated in […]
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.
- Panelists discuss the harmful impacts of inappropriately applied #steptherapy at #NORDSummit2018 @RareDiseases https://t.co/UDNUFcG592
- Dr. Jess Theone presenting on how Prior Authorization is a “new problem for rare disease patients.” #NORDSummit https://t.co/rdGnXawjKf
- Even with all the exciting sessions at this years #NORDSUMMIT the #RareAction team has set aside some time for lead… https://t.co/iy2U18yqMT
- RT @RareDiseases: .@RareAction Ambassadors happy to make other people jazzed about their own #raredisease advocacy. That’s what it’s all ab…
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 […]