Entries by Shannon vonFelden

RareVoice Awards Nominations Closing Soon

The RareVoice Awards nominations for 2019 are open! We encourage the community to nominate individuals and organizations who have gone above and beyond to become rare disease policy leaders, having passed or supported legislation for the rare disease community at the state and federal level. There is even a category for teenagers/young adults who have […]

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

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

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

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

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

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

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, […]