Rare Diseases Clinical Research Network

Patient advocacy in clinical research

Monday, May 1, 2017

The Pulse on Global Trials by Matthew Howes

Earlier this year, the FDA approved the first artificial pancreas for type 1 diabetes. The advancement is remarkable not just for the technology alone, but for how it came to be.

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New patient contact registry for rare eosinophilic gastrointestinal diseases

Wednesday, March 4, 2015

The Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR) has launched a patient contact registry for individuals with eosinophilic gastrointestinal diseases (EGID), a group of rare diseases. The registry is located at www.rdcrn.org/CEGIR. Its purpose is to create a single, international database with information submitted by patients with EGID and their families. The database will enable CEGIR investigators to identify and recruit patients with EGID for new research studies for improving treatments and clinical care.

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NIH awards $5.9M in grants for frontotemporal degeneration research

Wednesday, October 29, 2014

The NIH will award three large, five-year projects on a specific form of dementia, known as frontotemporal because of the areas of the brain that are affected. The projects, funded by the NIH’s National Institute of Neurological Disorders and Stroke (NINDS), National Institute on Aging (NIA) and the National Center for Advancing Translational Sciences (NCATS), will receive more than $5.9 million for 2014.

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