Rare Disease Week

Rare Disease WeekRare Disease Day takes place on the last day of February each year in countries around the world. This international awareness campaign highlights rare diseases and their impact on patients’ lives. Hydrocephalus as a whole is not a rare disease. We have one million Americans affected by the condition, from infants to seniors. However, there are etiologies of the condition that are rare. X-linked hydrocephalus, part of the L1 Syndrome, is an example. You can learn about hydrocephalus in conjunction with other rare conditions and diseases by clicking here.  And as we fund studies into genetic causes of hydrocephalus, more patients living in the rare disease space may join our community.

Every year the Hydrocephalus Association supports our partnership with organizations in the rare disease space and raises our voices for our community living with hydrocephalus and, in particular, with rare causes and forms of hydrocephalus, by participating in Rare Disease Day at NIH and Rare Disease Week on Capitol Hill. This year we invite our advocates to join our staff to represent our community at these events. The goal of the week is to bring 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.

Below is a schedule for the week. You do not need to sign up for every event but note that you must attend the Legislative Conference on Tuesday to participate in the Lobby Day on Wednesday. In addition to the events here, HA will have a briefing Tuesday evening for our own advocates to prepare them for meetings on Capitol Hill. 


Monday, February 27, 2017
8:30 am – 3:30 pm
Rare Disease Day at the National Institutes of Health (NIH)
NIH Clinical Center’s Masur Auditorium
6610 Rockledge Dr, Bethesda, MD 20814
* Must be registered SEPARATELY with NIH to participate. REGISTER

Monday, February 27, 2017
5:30 pm – 9:03 pm
Cocktail Reception and Rare Disease Documentary Screening
U.S. Naval Heritage Center
701 Pennsylvania Ave NW, Washington, DC 20004

Click here to REGISTER.

Tuesday, February 28, 2017
9:00 am – 5:00 pm
Legislative Conference 
FHI 360
1825 Connecticut Ave NW #2, Washington, DC 20009

Registration now CLOSED. Click here to watch the livestream of the Legislative Conference.

Tuesday, February 28, 2017
5:30 pm
Hydrocephalus Legislative Issues Training and Dinner
Buca di Beppo
1825 Connecticut Ave., NW Washington, DC 20009

Wednesday, March 1, 2017
7:30 – 9 am
Lobby Day Breakfast 
Hyatt Regency Washington
400 New Jersey Ave. NW, Washington, DC 20001

Click here to REGISTER for the Breakfast.

Wednesday, March 1, 2017
9 am – 5 pm
Scheduled Meetings with Members of the House and Senate
Capitol Hill

Registration is now CLOSED.

Wednesday, March 1, 2017
5 pm – 7 pm
2017 Rare Artist Reception
Kennedy Caucus Room, Russell Senate Office Building
Washington, DC 20004

Click here to REGISTER for the Rare Artist Reception

Thursday, March 2, 2017
12 – 1 pm
Congressional Rare Disease Caucus Briefing
Dirksen Senate Office Building, Room G-50


To register, please visit the RDLA website: REGISTER
Please email advocacy@hydroassoc.org and let us know you will be participating.

If you are interested in becoming a Grassroots Advocate for Hydrocephalus, please JOIN THE HYDROCEPHALUS ACTION NETWORK (HAN)! There will be many future grassroots activities where we will need your participation.


Participants will be meeting with Senators and Representatives from their home state and district. Participants should plan to be available for these meetings on Wednesday, March 2nd from 9:00 am – 5:00 pm. Unless otherwise requested, participants will be placed into groups according to congressional district and state. Participants will receive their meeting schedule at Tuesday’s Legislative Conference. If you have strong relationships with a particular House or Senate office that you would like to draw on in setting up your meetings, please email us as soon as possible at advocacy@hydroassoc.org.


Registration for Rare Disease Day at NIH and Rare Disease Week on Capitol Hill is completely complimentary and includes both the advance and the on-site training sessions, the reception on Monday and Thursday evenings, the Kick-Off Breakfast, and assistance in setting up your appointments with your Congressional offices. Participants must fund all other expenses, including their travel to/from Washington, D.C.; transfers; hotel accommodations; and other meals.


A room block has been reserved by RDLA at several hotels. The complete list of hotels can be found here.

HA welcomes its supporters to stay in the Hyatt Regency Bethesda, 1 Bethesda Metro Center, Bethesda, MD 20814, just down the street from HA headquarters and above the Bethesda Metro Station.  The rates were between $160 and $190.  We do not have a block reserved. RESERVE

To find lower-priced hotel accommodations, please visit:

bedandbreakfastdc.com (Bed and Breakfast rooms tend to run lower in price and are quite lovely in the city.)

If you would like assistance from the Hydrocephalus Association, please contact advocacy@hydroassoc.org.


If you register to participate, and find that you can no longer attend, please contact us immediately. We request that you notify us no later than Tuesday, February 23, if possible, so we can make the necessary adjustments to the scheduled meetings.


Please contact the Hydrocephalus Association by telephone at (888) 598-3789 or via email at advocacy@hydroassoc.org.

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