Entries by Shannon vonFelden

Sick Cells and the Sickle Cell Disease Association of America Asks Advocates to Write Their Representatives to Pass S. 2465 in the House

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, […]

Get Ready for Rare Disease Week on Capitol Hill 2019

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 […]

October 17, 2018: RDLA Monthly Meeting

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 Asks Advocates to Contact Congress to Support the Ensuring Lasting Smiles Act

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 […]