If you are interested in getting up to speed with pending legislation and policy at both the federal and state level that impacts our Dup15 community as well as the rare disease community as a whole, here are some steps that you can take!
JOIN NORD'S RARE ACTION NETWORK ("RAN")
The National Organization for Rare Disorders (NORD) is a national nonprofit that works at the federal and state levels to influence policy that impacts the rare disease community. NORD’s Rare Action Network (RAN) is an important resorce that provides news and information on issues that are pending before state and federal legislatures that are especially relevent. If you sign up for RAN, you will receive e-mails that provide information regarding these issues and how to participate in RAN Calls to Action. It is up to you whether you want to take action on the issues. For example, RAN may suggest that you sign on to an email to a Congressional member or call your specific legislator(s).  To join RAN, go to:
REVIEW YOUR U.S. SENATORS' AND REPRESENTATIVE RDLA SCORECARDS
The Rare Disease Legislative Advocacy program maintains a scorecard that provides a grade for each of the U.S. Senators and Representatives with regard to where they stand on rare disease legislation. We urge you to look up this scorecard for your 2 U.S. Senators and 1 Congressional Representative by clicking on this link:
BOOKMARK THE RDLA "TAKE ACTION" LINK
The Rare Disease Legislative Advocates (RDLA) is a program of the EveryLife Foundation for Rare Diseases. It is designed to suppport the advocacy of all rare disease patients and organizations by providing a platform to promote their legislation. The RDLA’s TAKE ACTION link highlights legislation at both the state and federal level that is important to the rare disease community. If you bookmark this link, and check it weekly, you can make a big difference in advocating for change!  Here’s the link:
REVIEW YOUR STATE'S REPORT CARD
Since 2015, the National Organization for Rare Disorders (NORD) has maintained its State Report Card project that evaluates how effectively states are serving people with rare diseases. NORD hones in on several critical policy areas at the state level, including Medicaid Financial Eligibility, Medical Nutrition Newborn Screening, Prescription Drug Out-Of-Pocket Costs, Protecting Patients in State Medicaid Programs and State Regulated Insurance, Rare Disease Advisory Councils, and Step Therapy. We urge you to look at your state’s report card to better understand your state’s respective strengths and weaknesses with regard to serving people with rare diseases by clicking on this link: