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Wall Street Journal Features an Article on the Importance of Rare Disease Research

Sarah Kucharski

The March 21st edition of the Wall Street Journal features an article by noted health journalist Amy Marcus titled “Hard Choices in Pursuit of Rare-Disease Cures: Patients Urge More Data Gathering as Tighter Federal Budget Crimps Research” which details the …

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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

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Rare Disease Week in D.C. featured in Florida Newspaper

“Cape woman fights for rare-illness sufferers, honors her son with advocacy.”

A few weeks ago, Hickman, who now lives in Cape Coral, went once again to Washington, D.C., to speak to politicians for the Rare Disease Legislative Conference & Lobby …

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Read About the Legislation Featured at Lobby Day

During Rare Disease Week 2014 in Washington D.C. over 160 rare disease advocates lobbied for 3 main pieces of legislation and asked their legislators to join the Rare Disease Legislative Caucus.…

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Feb. 27th Rare Disease Congressional Caucus Briefing


Rare Disease Legislative Advocates, National Organization for Rare Disorders & Jonah’s Just Begun Foundation to Cure Sanfilippo, in coordination with
Rare Disease Congressional Caucus Co-Chairs
Representatives Leonard Lance (R-NJ) and Joe Crowley (D-NY),
will host a briefing featuring

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Rare Disease Day Cocktail Reception & Documentary Screening

Please join RDLA for our 4th Annual Rare Disease Cocktail Reception & Screening of the HBO Documentary Film Life According to Sam to kick-off Rare Disease Day Week in Washington, DC.

Tuesday, February 25, 2014

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Rare Disease Legislative Conference & Lobby Day 2014

Join RDLA and 200 rare disease advocates in Washington, DC for Rare Disease Day – Week, February 25th – 27th 2014. 

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Join us in Washington DC: Rare Disease Day – Week Feb. 25th – 28th

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You are invited to join RDLA and 200 rare disease advocates in Washington, DC for Rare Disease Day (Week), February 25 – 28, 2013.  Below is an overview of the events.…

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2013 Rare Disease Legislative Conference Presentations

Event date: February 26, 2013
Legislative Conference

RDLA hosted it’s first Legislative Conference in Washington, DC on February 26 during for Rare Disease Day week. Nearly 200 advocates attended to learn about the legislative and political process. The goal of the conference was to give attendees the tools to build relationships with Members of Congress, and work with stakeholders to build coalitions, introduce and pass legislation.

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RDLA’s 3rd Annual Rare Disease Cocktail Reception & Movie Screening

Event date: February 25, 2013

Join us for our 3rd Annual Rare Disease Cocktail Reception & Movie Screening to Kick off Rare Disease Day Week in Washington DC
Monday, February 25, 2013 5:00 – 9:30 pm
Carnegie Institution of Science 1530 P Street Northwest, Washington DC

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Alliance for a Stronger FDA

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