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,
and resources
to become effective
advocates for rare diseases
2021 Rare Disease Day Virtual Advocacy Events
NORD Rare Action Network Rare Disease Day Virtual Advocacy Event Registrations Are Now Open! NORD Rare Action Network invites you to join patients, families, caregivers and other rare disease community members at this important virtual Rare Disease Day events across the country to educate state legislators and the general public on the challenges faced by rare disease patients and their families. We will explore how the state could address the needs of those living with a rare disease in their state by providing stakeholders an opportunity to make formal recommendations to state leaders about the most important issues they face, including the need for increased research and awareness, knowledgeable health care providers, and timely access to affordable diagnostics, treatments and cures. Visit your states page and register today! If you don’t see an event listed for your state, please consider joining the event of a neighboring state.
- Now is the time for Congress to pass the Medical Nutrition Equity Act (H.R. 3783/S. 2013)! Contact your legislators… https://t.co/5zTgudG9l0
- We’re thrilled to share @LouisianaGov has signed leg to create a Rare Disease Advisory Council (RDAC) into law! The… https://t.co/KT5FhVuVoE
- RT @RareDiseases: NEWS: Today’s #SCOTUS ruling on the #AffordableCareAct (#ACA) is a momentous step forward to protecting patients with a #…
- Attn PA advocates! Fail first prescribing practices & prior auth need to be reformed so that pts can access the car… https://t.co/dwYloNgyzM
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.
