Sept. 17th & 18th Rally for Medical Research Lobby Day

Medical Research is an issue that the rare disease community cares deeply about. If you would like to participate in this year’s rally: register here

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Bio Patient & Health Advocacy Summit

The event will be held October 14-15,2014 at the Mayflower Renaissance Hotel in Washington, DC. To register, please visit this link. For those traveling from out of town, BIO has a limited number of rooms reserved in the BIO room block (available here).

Bio Patient Health Advocacy Summit

In-District Lobby Days

One of the most important parts of being a rare disease advocate is building relationships with your Members of Congress, your state and local legislators, and other advocates in your community. Click below to register for RDLA’s In-District Lobby Days

For help and questions contact Andy Russell @ 415 884-0223, arussell@everylifefoundation.org

 July 11th Deadline to Register to Participate Read more

RDLA’s June Webinar/Conference Call

 

Tuesday, June 17th, 2014
11:30 a.m. to 12:30 p.m. EST

Rare Disease Congressional Caucus Briefing May 7th


Rare Disease Legislative Advocates & National Organization for Rare Disorders in coordination with
Rare Disease Congressional Caucus Co-Chairs Representatives Leonard Lance (R-NJ) and Joe Crowley (D-NY), held a briefing

“Access to Care & Therapies in the New Healthcare System: A Rare Disease Perspective”

Wednesday May 7, 2014

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Hearing Notice – 21st Century Cures: PCAST’s Report on Drug Innovation

The Subcommittee on Health will hold a hearing on Tuesday, May 20, 2014, at 10:00 a.m. in 2322 Rayburn House Office Building.  The hearing is entitled “21st Century Cures: The President’s Council of Advisors on Science and Technology (PCAST) Report on Drug Innovation.”  Witnesses will be announced and are by invitation only.  The hearing webcast will be available at http://energycommerce.house.gov/.

A bipartisan staff briefing will be held on Monday, May 19, 2014, at 4:00 p.m. in 2218 Rayburn House Office Building.  The Republican staff briefing will follow immediately after the bipartisan briefing in 2218 Rayburn.  The Democratic staff briefing will follow immediately after the bipartisan briefing in 2322 Rayburn.

If you have any questions concerning this hearing, please contact John Stone, Carly McWilliams, Paul Edattel, Brenda Destro, or Katie Novaria at (202) 225-2927.

RDLA’s April Advocate Luncheon/Conference Call

Advocate’s Luncheon/Conference Call

Wednesday, April 23rd, 2014 12 noon to 1:30 pm

Location: Offices of Polsinelli 1401 Eye Street NW 8th floor Washington, DC,  20005

Monthly Meetings

Join us for our next Legislative Webinar on Tuesday, May 17th, 2016

Click here to register!

 

Once a month RDLA convenes in person and/or over the phone to discuss legislation and developments that affect the rare disease community. The meeting/conference calls are essentially a clearing house for legislation and participating in the calls does not imply support for any of the policy proposals or legislation that are discussed or promoted at meetings.

2016 RDLA Call Schedule:

2015 RDLA Calls: click for agendas and PowerPoint presentations

2014 RDLA Calls: click for agendas and PowerPoint presentations

SCAD Alliance at Rare Disease week 2014

“As anticipated, Rare Disease Day 2014 events did not disappoint. We are taking the information we gained and are busy reaching out to new contacts to advance the mission of SCAD Alliance.” – SCAD Alliance

Read more about SCAD Alliance at Rare Disease Week in Washington D.C. 2014