After President Trump announced his intention to scrap health insurance marketplace subsidies via executive order earlier this month, Senators Patty Murray (D-WA) and Lamar Alexander (R-TN) introduced a bipartisan bill entitled, “the Health Care Stabilization Act of 2017” in an attempt to stabilize the marketplace.
This week, we continue to introduce you to advocates nominated for RDLA’s 6th annual RareVoice Awards. The patient activists nominated in the “State Advocacy by a Patient Advocate” category worked to advance state policies that are beneficial for the rare disease community.
HB972 and SF1023 are EMS Protocol Bills that support individuals with “special medical needs.” In order to preserve these bills in their current state, Danny’s Dose is encouraging advocates to call or email their legislators to voice their support. If authors change legislative language to only cover Adrenal Insufficiency, thousands of patients could be left […]
On November 15th, the Rare Disease Congressional Caucus will host a briefing on “Diagnostic Challenges for Rare Disease Patients.” This event will brief Members of Congress and staff on challenges to diagnosing rare disease, emerging technologies and possible policy solutions. Rare disease patients often have to see multiple doctors over many years before they receive a diagnosis. […]
NORD is encouraging patient advocates to call, email and tweet their Senators in support of the Orphan Drug Tax Credit (ODTC). Yesterday, the House passed a tax reform bill that would get rid of the ODTC, a critical incentive for orphan drug creation. These provisions are now being considered by the Senate. The ODTC allows […]
This week we are introducing you to the advocates nominated for RareVoice Awards in the “Federal Advocacy: Patient Advocate,” category. These individuals not only fought for legislation that helps rare disease patients, but also raised awareness about policy that impacts them within the community.
Lawmakers are currently considering tax reform legislation that could repeal an incentive for developing orphan drugs: the Orphan Drug Tax Credit (ODTC). NORD is encouraging advocates to call or email their Members of Congress to ask them not to repeal the ODTC. Last month, the organization circulated a letter from patient organizations to Congress highlighting […]
Congress has missed the September 30 deadline to renew funding for the Children’s Health Insurance Program (CHIP). CHIP is essential for families who do not qualify for Medicaid, but struggle to afford private insurance. A majority of states will deplete their CHIP dollars by March and some by December of this year.
The Epilepsy Foundation is asking patient advocates to write to their legislators to encourage them to oppose the Americans with Disabilities Act (ADA) Education and Reform Act of 2017 (HR 620). According to the Foundation, the bill would weaken protections for people living with disabilities by making it easier for businesses to avoid complying with […]
In this series, we will be introducing you to rare disease advocates who made an impact at the state and federal level. These passionate teens are all nominated for RareVoice awards in the “Federal or State Advocacy by a Teenager” category.
