Rare Disease Report

Retrophin Donates $3 Million to Create Rare Disease Network

JANUARY 11, 2018
Mathew Shanley
Retrophin, Inc., a company committed to identifying, developing and delivering therapies to patients with rare diseases, has announced a partnership with the Children’s National Health System in which it will donate funds toward the establishment of the Rare Disease Network.

The Children’s National Health System has been operating since 1870, and ranks #1 for babies and in the top 10 for four other specialties, including: cancer, neurology and neurosurgery, orthopedics, and nephrology.

The biopharmaceutical company has committed $3 million over the next 6 years to support the work of the Children’s National Rare Disease Institute (CNRDI), the first Center of Excellence for the National Organization for Rare Disorders (NORD). This unique center is focused exclusively on advancing the care and treatment of children and adults with rare genetic diseases, and its intention is to provide a medical home for patients and families seeking the most advanced care.

The Rare Disease Network has been designed to augment the field of rare disease medicine by regulating care models and establishing world-wide best practices in diagnosis and treatment.

“Retrophin is proud to support the important work that Children’s National Rare Disease Institute is doing to advance the care and treatment of rare diseases,” said Stephen Aselage, chief executive officer of Retrophin. “The tremendous difficulty that patients with rare diseases have in getting an accurate diagnosis and early treatment is well documented. The creation of this network is critical to broadening access to the Institute’s innovative resources and programs, and will ultimately lead to expanded specialized care for patients and families in the rare disease community.”

Funding for new dedicated positions at the CNRDI will be funded by the Retrophin Rare Disease Network, and the team will work to advance the streamlining of patient access to the most ideal care methods among peer institutions across the country and around the world.

Marshall Summar, M.D., director of the CNRDI, is excited about the prospects of the new network. “One of the chief challenges of 21st century pediatric medicine is our continued inability to provide more help to those born with rare genetic diseases,” he said. “We are grateful for this gift from Retrophin that will help us accelerate progress for our patients and families and pursue work that will have a far-reaching impact on both children and adults across the country and around the world. This is an exciting first step toward a new era of rare disease care and innovation.”

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