2024 Rare Disease Advocacy Week in Washington, D.C!
February 25 @ 8:00 am - February 28 @ 5:00 pm EST
The Everylife Foundation for Rare Diseases is hosting their Annual Rare Disease Advocacy Week on Capitol Hill. The Hydrocephalus Association will be active and on site for the momentous 3-day event, February 25th – 28th in Washington, DC. Rare Disease Advocacy Week brings together hundreds of individuals and families within the rare disease community to share their stories with Congress.
TO REGISTER:
Registration is a two-step process.
- Register with EveryLife
- RSVP to HA for hydrocephalus-only events.
HA is excited to bring our hydrocephalus advocates together. We will be hosting a hydrocephalus-specific training over dinner on Monday evening. We look forward to seeing you!
AGENDA:
Sunday, February 25th:
OPTIONAL: Rare Disease Documentary Screening and Reception (5:00 pm ET)
Location: Ronald Reagan Building and International Trade Center
Monday, February 26th:
MANDATORY: EveryLife Legislative Conference and Training
9:00 am – 5:00 pm ET
Location: Ronald Reagan Building and International Trade Center
OPTIONAL: EveryLife Young Adult Rare Representatives (YARR) Meetup
Advocates 16-30 years old only
6:00 pm ET
Location: Ronald Reagan Building and International Trade Center
HIGHLY RECOMMENDED: Hydrocephalus Assocation Training and Dinner
7:00 pm ET
Location: TBD
Tuesday, February 27th:
MANDATORY: Meetings with Members of Congress
9:00 am – 5:00 pm ET
Location: Capitol Hill, Washington DC, 20004
Wednesday, February 28th:
OPTIONAL: Achieving Equity in Rare Disease Roundtable on Capitol Hill
10:00 am – 12:00 pm ET
OPTIONAL: Rare Disease Congressional Caucus Briefing Capitol Hill
1:00 – 2:30 pm ET
OPTIONAL: EveryLife Rare Artist Reception Capitol Hill
3:30 – 5:30 pm ET
Thursday, February 29th:
OPTIONAL: Rare Disease Day at NIH 2024
Location: National Institutes of Health, Building 45, Natcher Building Bethesda, MD 20894
REGISTER HERE
Friday, March 1st:
OPTIONAL: Rare Disease Day at FDA (virtual)
REGISTER HERE
Click HERE to find a description of the timeline and schedule for Rare Disease Week 2024.
Is Hydrocephalus Rare?
Although hydrocephalus is not technically considered a rare disease due to the over 1 million individuals who have the condition, the various medical classifications (etiologies) of hydrocephalus are considered rare. For example, hydrocephalus caused by a brain bleed (post hemorrhagic hydrocephalus) or X-Link Hydrocephalus.
Questions:
Email us at advocacy@hydroassoc.org