Something for Everyone at Rare Disease Week on Capitol Hill

This January, as you pack up your holiday decorations and contemplate how to keep your New Year’s resolutions, remember another season of hope is right around the corner. Rare Disease Week on Capitol Hill is February 28th through March 2nd, 2023. For more than a decade, this annual gathering of rare disease patients and allies has served as the rare disease advocacy epicenter for hundreds of patients and their families.

Hosted by the Rare Disease Legislative Advocates (a program of the EveryLife Foundation for Rare Diseases), Rare Disease Week brings together rare disease advocates from all walks of life to make their voices heard by their Members of Congress. Participants are educated on policy proposals impacting the rare disease community and provided opportunities to advocate for policy changes directly to their Members of Congress.

A unique appeal of the event is that no matter one’s connection to rare disease or their advocacy experience level, all are welcome. The wide range of activities provide something attractive for everyone at Rare Disease Week on Capitol Hill. Here are some examples:

The movie buff The week kicks off with the screening of a rare disease documentary film. Featuring real life stories of rare disease, the film helps to illustrate the human need for policy action. A pre-reception with cocktails and conversation and a post-panel discussion bookends this inspiring evening.

The lifetime learner The Legislative Conference offers a full day of interactive seminars led by expert speakers. Participants learn about the legislative process, legislation currently under consideration by Congress, and effective advocacy techniques to build relationships with Members of Congress and congressional staff. The content is made accessible for both new and experienced advocates.

The young leader Advocates aged 16-to-30 are welcome at the Young Adult Rare Representative (YARR) Meetup. This private event encourages relationship building in a supportive environment. Advocates of all ages are invited to join a virtual graduation ceremony celebrating the 2022 graduating class of the YARR Leadership Academy.

The change maker “Hill meetings” take place on Capitol Hill and are appointments made for advocates with their Members of Congress. These meetings take place on the final day of Rare Disease Week and allow advocates to share their stories and advocate for policy changes that matter most to them. These meetings are for patients and caregivers only and are not open to industry representatives. Prior to their Hill meetings, advocates may join the Rare Disease Congressional Caucus Briefing, also taking place on Capitol Hill, which is hosted for Members of Congress and their staff to educate them on current rare disease policy issues.

The art lover Wind down from the week at the Rare Artist Reception and view award-winning artwork created by rare disease patients, caregivers, and others affected by rare disease. Meet the artists behind each piece and hear the stories that inspired their art – all while enjoying beverages and hors d’oeuvres.

No matter your rare disease background or interest, Rare Disease Week on Capitol Hill offers an inspiring experience and a chance to make a difference for rare disease patients for generations to come. The advocacy event is a tradition made possible by the patients and caregivers who come and bravely share their stories, selflessly encouraging one another along the way.

Registration for Rare Disease Week on Capitol Hill opens January 4th, 2023.

Britta Dornan EveryLife Foundation for Rare Diseases Senior Director of Communications and Marketing

Britta is a rare disease patient living with primary lymphedema for over three decades. She develops and executes strategies that inspire patients and caregivers to engage in advocacy to make their voices heard.

The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments and cures.

Photo caption: Rare disease advocates gathered at the Ronald Reagan Building and International Trade Center in Washington, D.C. during Rare Disease Week on Capitol Hill 2020.