What is Rare Disease Week on Capitol Hill?

Rare Disease Week on Capitol Hill brings rare disease community members from across the country together to be educated on federal legislative issues, meet other advocates, and share their unique stories with legislators. The week of events starts with Rare Disease Day at the National Institutes of Health. That evening, join fellow advocates as well as representatives of government agencies and biopharmaceutical companies at the Rare Disease Documentary Screening & Cocktail Reception.

The next day, advocates attend RDLA’s Legislative Conference to learn about the legislative process, legislation currently under consideration by Congress, and effective advocacy techniques to build a relationship with Members of Congress and staff.  The conference is crafted to educate advocates with little to no political experience and to provide useful updates to those with a history of political action.  Our aim is to have every advocate leave the Legislative Conference with confidence in their ability to make a difference on Capitol Hill. On Lobby Day, advocates put what they learned at the Legislative Conference to work.  At breakfast, keynote speakers prepare attendees for the day of meetings with Members of Congress and their staff, raising awareness of rare disease and advocate for the legislation most relevant to them. On Thursday, advocates have the opportunity to attend the Rare Disease Congressional Caucus briefing, where policy experts and rare disease stakeholders come together to educate Congressional staff and the public on issues of importance to the rare disease community. That evening, the EveryLife Foundation for Rare Diseases hosts the Rare Artist Reception with artists from around the country displaying their work and sharing their experience with rare disease with Members of Congress and staff. There is no cost to attend any of these events and they are open to the public. Advance registration is required, so please sign up for our email list or check this page regularly.

For updates on Rare Disease Week on Capitol Hill, follow RDLA on Twitter and Facebook.

View a full calendar of events here.

 

2 thoughts on “RDLA Presents 2016 Rare Disease Week on Capitol Hill Feb. 29- Mar. 3”

  1. Deanna Cox says:

    I am a 52 year old female patient who suffered a carotid artery dissection and a brain aneurysm. I have fibromuscular dysplasia (FMD). Thank you for helping rare disease awareness!

  2. Vivian Nyland says:

    I am a female in Michigan and I was recently diagnosed with sclerosing mesenteritis . I am very frustrated at how little the doctors know about this rare autoimmune disorder that severely affects the gastrointestinal system. I hope that the U.S. Congress authorizes funding for research in order to find treatments for rare diseases.

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