Reaching Beyond the Clouds: Cindy Abbott to Kick off CRN Family Conference

The Cystinosis Research Network is pleased to announce that Cindy Abbott will kick off the 2011 CRN Family Conference in San Francisco as our Inspirational Speaker on Friday, July 15th. On August 1st  2007 , she was diagnosed with Wegener’s Granulomatosis and on May 23rd 2010 , she summited Mt. Everest .

Reaching Beyond the Clouds: From Undiagnosed to Climbing Mt. Everest

On August 1st  2007 , I was diagnosed with Wegener’s Granulomatosis and on May 23rd 2010 , I summited Mt. Everest . With a rare and potentially life-threatening disease, at the age 51, and functionally blind in one eye: I joined an elite group of American females who have climbed the world’s tallest mountain. My journey to Mt. Everest began three years ago but my story, like so many other victims of rare unknown diseases, started more than a decade earlier.

IEP Checklist App

IEPChecklistiPhone The Parent Educational Advocacy Training Center (PEATC) offers an Individualized Education Program (IEP) Checklist iPhone app. School-aged students with disabilities are provided an Individualized Education Program designed to support their unique educational needs. The IEP Checklist App helps parents of students with special needs become better-informed advocates by making IEP information easier to access.

Raptor Pharmaceutical to Enroll Five Additional Patients in Pivotal Phase 3 Clinical Trial of DR Cysteamine for the Potential Treatment of Nephropathic Cystinosis

NOVATO, Calif., Feb. 15, 2011 (GLOBE NEWSWIRE) -- Raptor Pharmaceutical Corp. ("Raptor" or the "Company") , today announced it has reopened enrollment in its Phase 3 clinical trial of its proprietary delayed-release oral formulation of cysteamine bitartrate ("DR Cysteamine") in patients with nephropathic cystinosis ("cystinosis"). The pivotal Phase 3 clinical trial is designed as a study of the safety, tolerability, pharmacokinetics ("PK") and pharmacodynamics ("PD") of DR Cysteamine compared with immediate-release cysteamine bitartrate.


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