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Natasha Shur

NORD names Natasha Shur, M.D., as hero of rare disease

Natasha Shur

Dr. Shur has a career working as a clinical geneticist for over a decade. She has been a part of the Children’s National community for more than two years. Dr. Shur as well serves as the lead for the Telemedicine Genetics Program under the Rare Disease Institute.

For her advancements in telemedicine genetics and rare diseases, Medical Geneticist Natasha Shur, M.D., received the 2021 Rare Impact Award from the National Organization for Rare Disorders (NORD). The recognition is the highest honor given to individuals that developed exceptional work benefiting the rare disease community.

“Despite the pandemic and the challenges we have faced, there are still heroes to be found among us from whom we can draw inspiration and motivation to keep moving forward,” said Peter L. Saltonstall, NORD president and CEO.

Given her involvement with several innovative projects at Children’s National Hospital, Dr. Shur built an active in-home telemedicine program where patients are being seen for first visits and follow-ups. Her work is helping families, including those with autistic children.

“Recently, in our division, we have been talking a lot about the concept of ‘failing forward.’ The idea is to try new approaches. These methods may not work, but the status quo does not always work either,” said Dr. Shur. “Since we have such a supportive and wonderful group, we can try new ways of working and new models of care.”

During the pandemic, the division led by Marshall Summar,.M.D., also created a telehealth first model of care and augmented educational apps and opportunities. The goal was to ensure that patients with rare disease would not lose access to care. The medical geneticists, genetic counselors, dieticians and administrative team met daily and cohesively to explore and improve new clinical approaches in order to put patients and families first.

Dr. Shur has a career working as a clinical geneticist for over a decade. She has been a part of the Children’s National community for more than two years. Dr. Shur as well serves as the lead for the Telemedicine Genetics Program under the Rare Disease Institute.

The Rare Disease Institute recently opened its new location on the Children’s National Research & Innovation Campus, a first-of-its-kind pediatric research and innovation hub located in Washington, D.C. The campus will provide a unique, state-of-the-art home for clinical genetic and specialty services.

Doctor holding preemie's hand

Children’s National creates first-of-its-kind Rare Disease Institute

Children’s National Health System has announced the creation of the Children’s National Rare Disease Institute (CNRDI), a first-of-its-kind clinical research center focused exclusively on the care and treatment of children and adults with rare genetic disorders. Designated by the National Organization for Rare Disorders (NORD) as the first Center of Excellence for Clinical Care for Rare Diseases, the CNRDI will focus on developing care standards for patients, advancing research and developing new therapies to better treat rare diseases. The institute will be led by Marshall Summar, M.D., Chief of Genetics and Metabolism at Children’s National, and will collaborate with the NORD natural history/registry program, which was developed with input from the U.S. Food and Drug Administration and the National Institutes of Health to advance monitoring databases for patient outcomes and disease.