Subject: Join us for Rare Disease Week!
From: "Hydrocephalus Action Network" <[email-masked]>
To: "Hunter Biden" <[email-masked]>
Date: Sun, 24 Jan 2016 12:01:55 -0800

We are inviting our local advocates to join us for Rare Disease Week in Washington, DC.

Join us for Rare Disease Week in Washington, DC!

February 29 - March 3, 2016

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 local advocates to join our staff to represent our community at these events.

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.

We would enjoy spending time with you at some or all of these events! Please email [email-masked] to let us know you'll be attending so we can be sure to connect with you. Stay warm and safe in this storm!

SCHEDULE OF EVENTS

Monday, February 29th, 8:30am – 3:30pm

Rare Disease Day at the National Institutes of Health (NIH)

Monday, February 29th, 5:30 – 9:30pm

Cocktail Reception and Rare Disease Documentary Screening featuring Dusty’s Trail: Summit of Borneo at the U.S. Naval Heritage Center

Tuesday, March 1st, evening (Time TBD)

Hydrocephalus Legislative Issues Training, place TBD

Wednesday, March 2nd, 7:30 - 9am

Lobby Day Breakfast at the Capitol Hill Club

Wednesday, March 2nd, 9am - 5pm

Scheduled Meetings with Members of the House and Senate

Thursday, March 3rd, 12 - 1pm

Congressional Rare Disease Caucus Briefing in the U.S. Capitol Visitor Center

Thursday, March 3rd, 5 - 7pm

Rare Artist Reception in the Rayburn House Office Building

For those of you driving into town and needing lodging, we have information on our website. Click the information button below.

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Our mission is to promote a cure for hydrocephalus and improve the lives of those affected by the condition.

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Mailing Address:
Hydrocephalus Association
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US

Contact Name: Amanda Garzon
Telephone Number: (301) 202-3811

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