The RareAction 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 2015, NORD launched its State Report Card project with a goal of evaluating how effectively states are serving people with rare diseases. It is important to note, however, that these issues are not exhaustive. The issues contained herein touch on several critical and relevant policy areas at the state level, but with each issue included, there are still many others that are capable of impacting the lives of rare disease patients.
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.
- Our VA Volunteer State Ambassador, Jana Monaco, has been appointed to VA's Rare Disease Advisory Council as the Vic… https://t.co/JExsNMhrQK
- Without access to #MedicalNutrition products, patients with certain #RareDiseases face severe consequences. Help en… https://t.co/HCPXtmVK3k
- #MedicalNutrition is crucial for ppl with #RareDiseases like PKU to thrive. The Medical Nutrition Equity Act will e… https://t.co/Za3U67fip2
- September is #NewbornScreening (NBS) Awareness Month. #NBS detects certain treatable conditions shortly after birth… https://t.co/vHFRgWKURF
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.