What is Rare Disease Week?

Rare Disease Week on Capitol Hill is a free-week-long DC event hosted by the Rare Disease Legislative Advocates (RDLA) and coordinated byThe Everylife Foundation for Rare Diseases. The RDLA brings together over 500 patient advocates, who learn how to lobby members of Congress regarding constituents’ realities of living with rare diseases. The aim is to accelerate biotech innovation for rare disease treatments through science-driven public policy.

After a day of targeted training, the RDLA coordinates over 250 Lobby Day meetings connecting advocates and constituents from every state to their members of Congress.

Why does Narcolepsy Network participate?

An important part of our mission is to advocate for both our members and the narcolepsy community at large. We do this in a few different ways, with the most visible event being Rare Disease Week. Meeting with lawmakers and their staff gives us the opportunity to influence legislators at both the state and national level. Our advocates share their personal stories, experiences, and facts about narcolepsy. Each group of advocates (we break into states and districts, based on where each advocate lives) make specific “asks” to each Congressperson. It is truly democracy in action, and Rare Disease Week is a week of empowerment like no other opportunity.

These are some of the things advocates will experience:

• Learn best practices in persuading your Congress members to consider their constituents’ needs as they craft healthcare policy and legislation to fund research.
• Personally become acquainted with your Congressional representatives’ offices.
• Gain tips and insights through meeting rare disease advocates from all over the country.
• Join your fellow Narcolepsy Network advocates as we continue to bring people with narcolepsy into these important state and national level conversations.

Read more about the narcolepsy advocates who attended Rare Disease Week in 2019.

To be eligible for this program, applicants must be members of Narcolepsy Network. Advocates who are selected for this program must also register with the RDLA to participate in the  Rare Disease Week activities. Meals and transportation (to and from Washington, DC and in between events) will not be provided.