Rare Disease Institute Provides Innovative Digital Solutions amidst Pandemic with Support from Travere
Telehealth-first care. That’s the approach that many clinics and health centers adopted for preventative and follow up visits in the wake of the pandemic’s arrival. Online and on-phone visits enable healthcare professionals and their patients to manage conditions without the burden of travel or undo risk of exposure to the coronavirus.
There were likely few health centers better equipped for the transition to telehealth than the Children’s National Rare Disease Institute (CNRDI or Rare Disease Institute). When the pandemic arrived last year, CNDRI had already been expanding access to optimal rare disease care with new digital tools for protocol development, diagnosis and treatment.
The coronavirus outbreak made it even more critical to provide rare disease patients access to specialists and geneticists via telehealth.
“Travere Therapeutics’ support over the last two years allowed us to develop technologies and administrative infrastructure. This enabled us to roll out a telehealth response rapidly,” said Marshall Summar, M.D., director of the Children’s National Rare Disease Institute.
January 2021 marks the third year of Travere Therapeutics’ partnership with CNRDI at Children’s National Health System in Washington, D.C. Our support established the Travere Therapeutics Rare Disease Network (formerly Retrophin Rare Disease Network) at CNRDI. CNRDI is the central hub of the network and a first-of-its-kind, National Organization for Rare Disorders (NORD)-designated clinical Center of Excellence focused exclusively on advancing the care and treatment of children and adults with rare genetic diseases.
CNRDI works to expand access to diagnosis and care for families through innovation and technology. “We are successfully integrating remote and in-person care in a hybrid environment,” says Dr. Natasha Shur, a clinical geneticist at the CNRDI. “It’s really about using technology to create a new standard of care. This will set a national and international example of best practices.”
Geneticists and rare disease specialists use telemedicine to digitally connect with patients and their families, provide disease education, discuss treatment plans and best practices, and coordinate with their local physicians, who may not be familiar with the rare disorder, so that patients can receive as much of their care at home as possible.
Travere Therapeutics is proud to support the work of CNRDI to improve access and quality of rare disease care for people worldwide.