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As members of our South Carolina and North Carolina Rare Action Network, we hope you can join us for one of our upcoming Rare Action Network (RAN) Luncheons. These are free meetings that will give you the opportunity to connect, learn, and share with other rare disease advocates. More details are listed below. Together, we can make a [...]

Washington, D.C., July 12, 2017 – The National Health Council (NHC) and the National Organization for Rare Disorders (NORD) commend the House of Representatives for passing the FDA Reauthorization Act (FDARA) with overwhelming bipartisan approval. Passing this bill is a crucial step in reauthorizing four user fee programs that ensure the Food and Drug Administration (FDA) […]

Washington, D.C., June 27, 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 delay in consideration of the Senate Better Care Reconciliation Act: “Today, Senate Leadership announced they will not hold a vote this week on the Better […]

Washington, D.C., May 4, 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 passage of the American Health Care Act: “Today the House of Representatives passed American Health Care Act (AHCA). We are very disappointed the […]

UPDATE:  July 11, 2016 Illinois HB 4576 is close to passing!  This bill would establish a Rare Disease Commission that would give patients – many of whom are too young or sick to speak for themselves – a voice in the state government.  The bill is awaiting Governor Bruce Rauner’s signature before it is passed […]

RareAction continues to make strides around the country for the 1 in 10 Americans with rare diseases. In this version of the State Policy Legislative Tracker, there is an increase in the bills being supported in both Massachusetts and Tennessee. Learn more about the bills that RareAction is tracking and supporting to improve the lives of […]