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
Telemedicine Letters to Governors
NORD asks Governors to adjust their state licensure requirements to better facilitate telemedicine across state lines during the COVID-19 crisis.
State Policy Report Card
In the fifth edition, 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. For example, the latest report has grown to cover several emerging issues, such as the enactment of work requirements within Medicaid programs.
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.
- Too often, #raredisease patients receive a surprise medical bill for a treatment that they expected to be covered b… https://t.co/Oq1joJiotn
- NORD wants to hear from you! Share your experience with #telehealth during #COVID19 here: https://t.co/f8AHkRCbNr… https://t.co/wTrJKgdNtd
- RT @RareDiseases: In today's @nytimes, four brave families impacted by #raredisease are profiled in a piece that covers how they had to wor…
- The COVID-19 crisis has presented huge challenges for the rare disease community. Read NORD’s recommendations for h… https://t.co/sm0H0GZZCn
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.