The NIH established its Rare Diseases Clinical Research Network in 2003, garnering the help of patient advocate groups and research consortia for rare diseases. During its first phase, the network ...

Continuing our clinical trials theme, and leading us into our rare disease focus for August, we speak with Yaffa Rubinstein, from the Office of Rare Diseases Research at the National Institute of ...

through initiatives like the Rare Diseases Clinical Research Network, which is funded by the National Institutes of Health (NIH). As with any disease, whether it's rare or common like high blood ...

Patient associations are shaping trials, asking hard questions, and demanding realistic timelines for treatment delivery.

National Organization for Rare Disorders (NORD), Rare Disease Clinical Research Network, The American College of Medical Genetics, Genetics Society of America, The Bonnell Foundation, Cure ...

Featured keynote speakers will discuss how medical care and research around rare disease is evolving and improving and the state of rare disease in Michigan. Breakout sessions will provide ...

The Rare Disease Network, which includes Calvin University ... Featured keynote speakers will discuss how medical care and research around rare disease is evolving and improving and the state of rare ...

With 80% of rare diseases having a genetic cause, getting a head start on genetic testing for infants can be the key to an ...

A randomised, two-group, double-blind, placebo-controlled study remains the gold standard of clinical research. However, patients with rare diseases often have no other treatment options and many ...

The University of Alabama at Birmingham has special expertise in the evaluation and management of Rare Genetic ... Fabry Disease clinics and is unique in that it is led by nephrology. This clinic ...