Entries by Shannon vonFelden

Rare New England asks Massachusetts Advocates to Contact Legislators to Cosponsor H.1934 and SD.2264 to Create A Massachusetts Rare Disease Advisory Council

June 28, 2019 in , /by

Rare New England is asking Massachusetts constituents to contact their state legislators and ask them to cosponsor “An Act To Create a Massachusetts Advisory Council”. Patients and families living with rare diseases face many challenges, including finding accessible medical care, affording available treatments, obtaining appropriate educational opportunities, and having basic needs met in everyday life. […]

NFED Asks Advocates to Contact Congress to Cosponsor the Ensuring Lasting Smiles Act

June 27, 2019 in /by

The National Foundation for Ectodermal Dysplasias asks advocates to contact their Senators and Legislators to cosponsor the Ensuring Lasting Smiles Act (ELSA), H.R. 1379/S. 560. This federal legislation will mandate that insurance and self-funded, employer-sponsored health benefit plans provide coverage for all missing and malformed body parts, including teeth and associated structures, to restore and […]

Council for Affordable Health Coverage asks organizations to sign onto Senate Finance Committee Letter

June 18, 2019 in /by

The Council for Affordable Health Coverage is asking organizations to sign onto a letter to the Senate Finance Committee in support of including bipartisan legislation that removes barriers to value-based payment arrangements. The text of the letter is below. To sign your organization onto the letter, contact Sloane.salzburg@cahc.net by June 28, 2019. June XX, 2019 […]

The Lymphedema Advocacy Group Asks Advocates to Contact Congress to Support the Lymphedema Treatment Act, S.518/H.R.1948

May 28, 2019 in /by

The Lymphedema Advocacy Group is asking advocates to contact their Senators and Representative to cosponsor the Lymphedema Treatment Act, S.518/H.R.1948. Primary (congenital) lymphedema is associated with over 40 rare diseases. Secondary (acquired) lymphedema results when the lymphatic system is permanently damaged and has numerous causes including surgery, trauma, radiation, and severe infections. Currently, the compression […]

Research!America Asks Advocates to Contact Congress to Complete FY19 Appropriations

January 18, 2019 in /by

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 […]

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

November 1, 2018 in /by

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

October 26, 2018 in , , , , , /by

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

October 18, 2018 in /by

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 […]