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Amicus Therapeutics' CEO John F. Crowley to Advocate for Rare and Orphan Disease Community in Washington, D.C. This Week (0 Comments)

Date: 
09/12/2013

Amicus Therapeutics (FOLD) today announced that John F. Crowley, Chairman and Chief Executive Officer, will advocate for the rare and orphan disease community at several upcoming events in Washington, D.C tomorrow on September 12, 2013

CRANBURY, N.J., Sept. 11, 2013 (GLOBE NEWSWIRE) -- Amicus Therapeutics (FOLD) today announced that John F. Crowley, Chairman and Chief Executive Officer, will advocate for the rare and orphan disease community at several upcoming events in Washington, D.C tomorrow on September 12, 2013:

Rare Disease Congressional Caucus Briefing

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New Guidelines Announced for Diagnosis, Surveillance and Management of Rare Genetic Disease Called Tuberous Sclerosis Complex Two Peer-Reviewed Papers Featured in October Issue of Pediatric Neurology (8 Comments)

Date: 
10/22/2013

N E W S R E L E A S E

FOR IMMEDIATE RELEASE
September 23, 2013

CONTACT
Jaye Isham
Vice President, Communications Strategy
301-562-9890, jisham@tsalliance.org

New Guidelines Announced for Diagnosis, Surveillance and Management
of Rare Genetic Disease Called Tuberous Sclerosis Complex
Two Peer-Reviewed Papers Featured in October Issue of Pediatric Neurology

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Infantile Spasms Awareness Week (ISAW) - DECEMBER 6-10, 2013 (5 Comments)

Date: 
09/13/2013

In 2009, the Child Neurology Foundation proudly announced the creation of Infantile Spasms Awareness Week. The goal of IS Awareness Week is to provide pediatricians, child neurologists, parents and caregivers with objective educational tools which will increase awareness and understanding of infantile spasms. Early and aggressive treatment can impact the prognosis of infants diagnosed with IS. This important educational initiative will help to ensure that physicians have an increased awareness and understanding of IS.

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2013 International Research Conference on TSC and Related Disorders (6 Comments)

Date: 
09/13/2013

2013 INTERNATIONAL RESEARCH CONFERENCE HIGHLIGHTS

The Rothberg Institute for Childhood Diseases, in collaboration with the TS Alliance, presented the 2013 International Research Conference on TSC and Related Disorders: Molecules to Medicines on June 20-23, 2013, at the Omni Shoreham Hotel in Washington, DC. Nearly 200 researchers, clinicians and other constituents attended this successful and productive conference.

General Overview of the Conference

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Congressman Bilirakis discusses FDASIA implementation at Rare Disease Caucus Briefing (10 Comments)

Date: 
09/13/2013

Congressman Gus Bilirakis (R-FL) spoke at the Rare Disease Congressional Caucus Briefing on September 12, 2013 about the bipartisan letter being circulated by Members of Congress calling on the FDA to develop a clear guidance on the evidentiary criteria for Accelerated Approval for rare diseases. The letter asks FDA to fully implement FDASIA to provide a clear, workable framework for rare disease drug development.

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