Children's National Health System Launches Rare Disease Institute: 5 Things to Know

January 30, 2017

Written by Mackenzie Bean for Becker Hospital Review
Washington, D.C.-based Children’s National Health System developed the Children’s National Rare Disease Institute, a center focused on advancing the care and treatment of individuals with rare genetic disorders.
Here are five things to know.
1. The CNRDI’s main goal is to improve the lifespan and quality of life of rare disease patients, according to an emailed release.
2. The institute will track patient outcomes and treatment regimens, creating a database to advance rare disease research and knowledge gathering.
3. The CNRDI will also test and develop new therapies for rare diseases and provide training specific to rare diseases for clinicians, genetic counselors, nurses, researchers and allied health professionals, according to the report.
4. The National Organization for Rare Disorders designated CNRDI as its first Center of Excellence for Clinical Care for Rare Diseases.
5. Marshall Summar, MD, chief of genetics and metabolism at Children’s National Health System, will head the institute. Dr. Summar also serves as NORD’s board chairman.
Read more stories from the source here.

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