Rare Disease Week on Capitol Hill

Overview

During the week of February 27 – March 2, 2023, rare disease advocates will have an opportunity to meet with Members of Congress and to learn about policy updates and best practices for successful advocacy.

The Food and Drug Administration (FDA) has announced a virtual public meeting public meeting on Monday, February 27th, Intersections with Rare Diseases. Register separately here.

Rare Disease Week on Capitol Hill 2023 kicks off on February 28th with Rare Disease Day at NIH (register separately here), followed by a documentary screening and Rare Artist Virtual Gallery in the evening.

Participants will attend the full day Legislative Conference on March 1st to 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. This event is required for advocates to attend Hill meetings.

On March 2, attendees will gather for the Rare Disease Congressional Caucus Briefing which convenes policy experts and rare disease stakeholders to educate Congressional Staff, the public, and advocates on issues of importance to the rare disease community.

“Hill meetings” will be taking place throughout the day where appointments are made for advocates with their Members of Congress and staff. These meetings allow advocates to put what they learned at the Legislative Conference to work, share their stories, and advocate for policy changes that matter most to them. These meetings are for patients and carers only and are not open to industry representatives.

The evening closes with the Rare Artist Reception featuring winners from the Rare Artist contest exhibiting their art and sharing their stories with Members of Congress, Congressional staff and advocates.