Thank you to the more than 800 rare disease advocates who traveled from 49 states plus the District of Columbia to join us during Rare Disease Week on Capitol Hill 2019, which took place February 24th – 28th! Four-hundred and fifty of these advocates participated in 298 meetings with Members of Congress to bring our message: […]
We are excited so many advocates will be joining us in DC for Rare Disease Week on Capitol Hill. For those who are not able to travel to Washington, DC, there are a number of ways to participate from your own home! Please feel free to share with your family and friends too! Below are […]
Research!America asks advocates to contact Congress to complete the FY19 Appropriations bills. Critical science agencies like FDA and NSF are currently caught up in a partial government shutdown. Encourage your elected officials to end the shutdown and pass all remaining FY19 funding bills, ending the harmful impact on crucial scientific progress. Click here to take […]
In February 2018, the sickle cell community celebrated with the announcement of two legislative victories in Congress. First, the U.S. House of Representatives passed H.R. 2410 on February 26, 2018, the Sickle Cell Disease Research, Surveillance, Prevention, and Treatment Act, which was introduced on May 11, 2017, by Rep. Danny Davis (D-IL). On February 28, […]
Rare Disease Legislative Advocates (RDLA) will bring together over 500 patient advocates in Washington, DC for a week of events dedicated to empowering patients, families, friends, and healthcare professionals to become legislative advocates. During the week of February 24-28, 2019, advocates will have an opportunity to meet with Members of Congress and learn best practices […]
RDLA’s October Legislative Webinar and In-Person Meeting Wednesday, October 17th 12:00 pm to 1:00 pm ET New Opioid Law, Joel White, President, Horizon Government Affairs The Ensuring Lasting Smiles Act, Kathleen Laird, Senior Health Policy Advisor, Senator Tammy Baldwin and Becky Abbott, National Foundation for Ectodermal Dysplasias The Lymphedema Treatment Act Update, Patricia Egan, Lymphedema […]
The National Foundation for Ectodermal Dysplasias (NFED) asks you to write your member of Congress and ask them to co-sponsor the Ensuring Lasting Smiles Act (S.3369/H.R.6689). The Ensuring Lasting Smiles Act (also known as ELSA) will assure that individuals born with congenital anomalies receive health benefits for the medically necessary treatments they need. ELSA would […]
