The Rare Disease Legislative Advocates (RDLA) today announced the 2019 RareVoice Awards patient advocate finalists. View the finalists. The RareVoice Awards is an annual celebration, now in its eighth year, to honor advocates who give rare disease patients a voice on Capitol Hill and in state government. Patient advocates, industry executives, and Congressional and government […]
Thank you to the nearly 600 rare disease advocates who participated in meetings with their federal legislators during the August recess this summer! There were 303 meetings with Members of Congress or their staff in 49 states plus the District of Columbia. This is our highest turnout yet for our in-district meetings program, Rare Across […]
We are excited to welcome rare disease advocates from across the country to Rare Disease Week on Capitol Hill 2020 in Washington, DC from February 25-28, 2020! Rare Disease Week on Capitol Hill brings rare disease community members together to learn about federal legislative issues, meet other advocates, and share their rare stories with legislators. […]
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 […]
On September 11th, RDLA in coordination with the Rare Disease Congressional Caucus will host a briefing on “The Importance of the Newborn Screening Saves Lives Act”. This event will brief Members of Congress and staff on the importance of newborn screening programs and the impact of newborn screening on American’s lives. CLICK HERE to email or […]
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. […]
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 […]
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 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 […]
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: […]
