We are delighted to announce that the National Institutes of Health (NIH) Rare Disease Clinical Research Network (RDCRN) has awarded a 5-YEAR GRANT RENEWAL to the Porphyrias Consortium.
The RDCRN program is designed to advance medical research on rare diseases by providing support for clinical studies, and facilitating collaboration, study enrollment, and data sharing.
The Porphyrias Consortium includes six porphyria centers in the United States, as well as three current Satellite sites, that provide expertise and experience in the diagnosis and treatment of patients with porphyria. The staff in each center includes porphyria physicians, researchers, research coordinators, and technical/laboratory staff. Together with the American Porphyria Foundation, the Porphyrias Consortium enables a large-scale collaborative effort to develop new strategies and methods for diagnosis, treatment, and prevention of illness and disability resulting from these rare disorders.
Our patient community is blessed to have dedicated physicians and researchers focused on advancing knowledge and treatment of our group of rare diseases. Look for more details of this grant renewal in our upcoming APF 4th quarter newsletter.