24 Feb 2019
Sun 24 February, 2019
To :
Thu 28 February, 2019
1012 14th Street NW, Suite 500
United States
2019 events in United States
PRISMS will be joining
01 Feb 2019 - 28 Feb 2019
This is our 4th annual
01 Feb 2019 - 28 Feb 2019 Any
Broad Institute is proud
01 Feb 2019 - 01 Apr 2019 Cambridge
Rare Disease Day 2019! 
01 Feb 2019 - 01 Mar 2019 Everywhere
Chloe's Fight Rare Disease
02 Feb 2019 Minneapolis
2019 Perthes Kids Art Contest
04 Feb 2019 - 28 Feb 2019 Santa Monica
http://www.chp.edu/our-services/rare-disease-therapy/webinar Center
05 Feb 2019 - 29 Feb 2020 Pittsburgh, online
Awareness family night.
13 Feb 2019 Paterson, NJ
Medical Grand Rounds Lecture
14 Feb 2019 New Haven
Please support the Little
16 Feb 2019 - 28 Feb 2019 ALL
Please join Mississippi
19 Feb 2019 Jackson
Please join Georgia Rare
22 Feb 2019 Atlanta
Welcome to the SECOND SEE
22 Feb 2019 - 28 Feb 2019
osted by Baylor College
23 Feb 2019 Houston
Join the Rare and Undiagnosed
23 Feb 2019 Charlotte, NC
The 4th annual Rare Disease
23 Feb 2019 Houston
Rare Disease Week on Capitol
24 Feb 2019 - 28 Feb 2019 Washington
Join the worldwide campaign
25 Feb 2019 Paterson, NJ
Nemours Alfred I. duPont
25 Feb 2019 - 28 Feb 2019 Wilmington
About one in 10-20 people
25 Feb 2019 - 27 Feb 2019 Tampa
A global call to action
26 Feb 2019 - 28 Feb 2019
The Zebra 5K Run/Walk is
26 Feb 2019 - 28 Feb 2019 New Hope
Meeting objectives:To get
27 Feb 2019 Ann Arbor
Please join Illinois Rare
27 Feb 2019 Springfield
Please join Kentucky Rare
27 Feb 2019 Frankfort
Join us at the University
27 Feb 2019 Ann Arbor, Michigan
Clinical Trials 101: Understanding
27 Feb 2019 Lincoln
This year, join RARE. in
28 Feb 2019 Yonkers, NY
We are celebrating the
Please join Connecticut
28 Feb 2019 Hartford
Please join Ohio Rare Action
28 Feb 2019 Columbus
Please join Arizona Rare
28 Feb 2019 Phoenix
Please join Washington
28 Feb 2019 Spokane
Please join patients, families,
28 Feb 2019 Oklahoma City
Please join Maryland Rare
28 Feb 2019 Frederick
Delaware HOSA-Future Health
28 Feb 2019 Wilmington, Delaware
In support of BabyBane
28 Feb 2019 Atlanta
Broad Institute's fourth
28 Feb 2019 Cambridge
Time: 5pm-8pmLocation:
28 Feb 2019 Haddonfield
February 28th is I N T
28 Feb 2019 Norfolk, Virginia
Multiple Hereditary Exostosis
28 Feb 2019 - 01 Mar 2019 La Jolla San Diego...
The event will consistent
28 Feb 2019 Helen DeVos Children's...
The primary objective of
28 Feb 2019 New York City
Please join South Carolina
01 Mar 2019 Charleston
01 Mar 2019 - 02 Mar 2019 Notre Dame
Join us for a Bash to raise
01 Mar 2019 Cascades Manor House...
Please join Wisconsin Rare
02 Mar 2019 Greenfield
My name is Mikela, and
02 Mar 2019 San Jose
Please join Oregon Rare
07 Mar 2019 Portland
Please join Michigan Rare
07 Mar 2019 Lansing
Please join New Hampshire
07 Mar 2019 Concord
Please join New Jersey
11 Mar 2019 Trenton
Please join Minnesota Rare
11 Mar 2019 St. Paul
United States

Rare Disease Week on Capitol Hill 2019 24 February 2019 - 28 February 2019 1012 14th Street NW, Suite 500, Washington, United States
Hosted by Rare Disease Legislative Advocates

Rare Disease Week on Capitol Hill brings 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.

In 2019, the week of events will start with the Rare Disease Documentary Screening and Cocktail Reception on Sunday evening.

On Monday, advocates will attend RDLA’s Legislative Conference to learn about the legislative process, legislation currently under consideration by Congress, and effective advocacy techniques to build a relationship with Members of Congress and staff. The conference is crafted to educate advocates with little to no political experience and provide useful updates to those with a history of political action. Our aim is to have every advocate leave the Legislative Conference with confidence in their ability to make a difference on Capitol Hill.

On Tuesday, keynote speakers at breakfast will prepare attendees for their meetings with Members of Congress and staff. Advocates will put what they learned at the Legislative Conference to work as they advocate for the legislation most relevant to them in Lobby Day meetings.

On Wednesday, advocates will have the opportunity to attend the Rare Disease Congressional Caucus briefing, which will convene policy experts and rare disease stakeholders to educate Congressional staff and the public on issues of importance to the rare disease community. That evening, the EveryLife Foundation will host the Rare Artist Reception with artists from around the country displaying their work and sharing their experience with rare disease with Members of Congress and staff.

All events are free for patients, caregivers and other advocates but advance registration is required for each event.

Share this
Organised by
Rare Disease Legislative Advocates
Photos of the event