Marshall Summar

Children’s National Hospital announces licensing agreement with MGeneRx Inc. for proprietary biometric analysis technology

Retrieved on: 
Wednesday, July 14, 2021

Childrens National Hospital announces that it has entered into a licensing agreement with MGeneRx Inc. for its patented pediatric medical device technology using objective digital biometric analysis software for the early and non-invasive screening of dysmorphic genetic diseases.

Key Points: 
  • Childrens National Hospital announces that it has entered into a licensing agreement with MGeneRx Inc. for its patented pediatric medical device technology using objective digital biometric analysis software for the early and non-invasive screening of dysmorphic genetic diseases.
  • The objective digital biometric analysis technology was developed by a multidisciplinary Childrens National team led by Marius George Linguraru, D.Phil, M.A., M.Sc.
  • , of the Sheikh Zayed Institute for Pediatric Surgical Innovation and Marshall Summar, M.D ., director of the Childrens National Rare Disease Institute (CNRDI).
  • Childrens National is home to the Childrens National Research Institute and Sheikh Zayed Institute for Pediatric Surgical Innovation and is the nations seventh-highest NIH-funded childrens hospital.

The Children's National Hospital Rare Disease Institute And Takeda Partner To Standardize Care For Patients With Rare Diseases

Retrieved on: 
Monday, March 1, 2021

It can take years for patients to receive a correct diagnosis for rare diseases.

Key Points: 
  • It can take years for patients to receive a correct diagnosis for rare diseases.
  • , founding director of the Children's National Rare Disease Institute and chief of the Division of Genetics and Metabolism at the hospital.
  • In addition, this partnership underscores our commitment to driving continuous innovation and personalized care for patients with rare diseases."
  • The Children's National Rare Disease Institute is a first-of-its-kind center focused exclusively on advancing the care and treatment of children and adults with rare genetic diseases.

NORD State Report Card Grades States on Policy Issues Critical to Rare Disease Patients

Retrieved on: 
Wednesday, January 27, 2021

Despite a year marked by devastating impacts from the COVID-19 pandemic, the State Report Card demonstrates that progress was made in many states on newborn screening, step therapy, Rare Disease Advisory Councils and other key policies.

Key Points: 
  • Despite a year marked by devastating impacts from the COVID-19 pandemic, the State Report Card demonstrates that progress was made in many states on newborn screening, step therapy, Rare Disease Advisory Councils and other key policies.
  • "For almost 40 years, NORD has served as the voice of the rare disease community, and we are committed to fighting for rare disease patients and policy changes that will make a difference in their lives.
  • Our hope is that patients, advocates and policymakers find the new State Report Card site a useful tool in their work on policies to best meet the needs of rare patients and families."
  • The National Organization for Rare Disorders (NORD) is the leading independent advocacy organization representing all patients and families affected by rare diseasesin the United States.

Horizon and Willis Tower Elevate the Need for Rare Disease Innovation on Rare Disease Day

Retrieved on: 
Friday, February 28, 2020

We are honored that Willis Tower will elevate Rare Disease Day, and we will continue to do whatever we can to support the rare disease community and drive awareness of the need for continued innovation.

Key Points: 
  • We are honored that Willis Tower will elevate Rare Disease Day, and we will continue to do whatever we can to support the rare disease community and drive awareness of the need for continued innovation.
  • The need for rare disease innovation is significant: there are more than 7,000 known rare diseases and less than five percent have a U.S. FDA-approved treatment option.
  • Rare Disease Day is marked globally every year on the last day of February to underscore the nature of rare diseases and what patients face.
  • The National Organization for Rare Disorders (NORD) is the sponsor of Rare Disease Day in the United States.