State Policy Report Card

In this third edition of NORD’s State Policy Report Card 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. In terms of the expansion, the 2018 report has grown to cover several emerging issues, such as the enactment of work requirements within Medicaid programs and state adoption of “Right-to-Try” laws.

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.

NORD Issues Statement on Increasing Use of CoPay Accumulator Programs in Health Plans

June 4, 2018

Christi Jensen

Washington, D.C., June 4, 2018 — The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement on the increasing use of copay accumulator programs in health plans: “Recently, a number of health plans have started implementing, what are broadly known as, ‘copay […]

Rare Disease Advocates Host a Save the Orphan Drug Tax Credit Rally

November 28, 2017

Christi Jensen

Patients speak out as Congress moves forward with a tax bill that would negatively impact individuals with rare diseases Washington, D.C., November 28, 2017 –  Today, the National Organization for Rare Disorders (NORD) is hosting a Save the Orphan Drug Tax Credit Rally for the rare disease community in response to the tax reform bill being debated in […]