In-District Lobby Days: Resources
The following resources will help you be prepare for a meeting with your elected representatives. Click on the title to view the webinars. Building Relationships with Members of Congress How to Have a...
View ArticleUpdate: Funding for Secured for Gabriella Miller Kids First Research Act for...
In April, President Obama signed the Gabriella Miller Kids First Research Act authorizing Congress to allocate additional funding for pediatric cancer research through the National Institutes of Health...
View ArticleHow to Take Political Action in the Rare Disease Community
Many people in the rare disease community feel compelled to take action but do not really know where to start. As a rare disease advocate, you are critical to the legislative process. Your voice needs...
View ArticleWebinar Provides Overview of Rare Disease Week on Capitol Hill 2017
Rare Disease Legislative Advocates recently hosted a webinar which provided an overview of Rare Disease Week on Capitol Hill, to be held February 27th through March 2nd, 2017 in Washington, DC. The...
View ArticleNORD to Host Free Webinar on State Policy Report Card on January 24th
On January 24th at 3pm EST, the National Organization for Rare Disorders (NORD) will host a webinar on the 2016 State Report Card. Tim Boyd, Associate Director of State Policy at NORD, will discuss the...
View ArticleFour Ways to Participate Remotely in Rare Disease Week on Capitol Hill
If you are not able to join us and advocates from across the country at Rare Disease Week on Capitol Hill on February 27th through March 2nd, you can still make your voice heard on Capitol Hill and...
View ArticleKids v Cancer Creates Pediatric Cancer Legislative Yearbook for 2016
Kids v Cancer compiled a yearbook summarizing the achievements of pediatric cancer advocacy organizations in 2016 and outlining steps that pediatric cancer organizations plan to take in 2017. The...
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Rare Disease Week on Capitol Hill Engaged 600+ Advocates
Thank you to the 600+ rare disease patients, caregivers, researchers and other advocates who joined us for at least one event during Rare Disease Week on Capitol Hill in Washington, DC from Monday,...
View ArticleStay Informed! Get the Lowdown on 2018 Elections
Heading in to election season, it’s important that the rare disease community’s voice is heard at the state and federal levels. To ensure our continued success, RDLA has put together a collection of...
View ArticleGet 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...
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