Rare Daily Staff

Horizon Pharma has committed $3 million over six years to establish the Horizon Pharma Clinical Care Endowment, the first clinical team endowment created at the Children’s National Rare Disease Institute.

The CNRDI is a first-of-its-kind center focused exclusively on advancing the care and treatment of children and adults with rare genetic diseases. It is the first Center of Excellence for the National Organization for Rare Disorders and aims to provide a medical home for patients and families seeking the most advanced care and expertise for rare genetic conditions that remain largely unknown to the general medical community. 

The Horizon Pharma Clinical Care Endowment will provide stable support for an expert care team at the CNRDI. Each team will consist of a clinical geneticist and support team members—such as genetic counselors, nutritionists, and social workers—all specializing in the care of children with rare disease. 

“Patients and families with rare conditions deserve a medical home—a trusted place with the medical knowledge to provide quick, clear answers and the expert care they need,” said Marshall Summar, director of the CNRDI. “This endowment will support a dedicated team that can provide optimal, comprehensive care to more patients and ensure that families will have a trusted source for all aspects of their healthcare.” 

This long-term support provided by the Horizon Pharma Clinical Care Endowment will give the CNRDI a firm foundation for treating patients earlier, more consistently, and over the course of their lifetime. Horizon’s commitment marks the first donor-funded endowment at the CNRDI. 

“The Children’s National Rare Disease Institute is an important step in better defining the journey from diagnosis to treatment for people living with rare disease and their families,” said Timothy Walbert, chairman, president and CEO of Horizon Pharma. “Our hope is that the Horizon Pharma Clinical Care Endowment and the Institute will disrupt this all-too-familiar rare disease trajectory by joining exceptional rare disease specialists together in one place.” 

February 26, 2018
Photo: Marshall Summar