This week, the Fanconi Anemia Research Fund (FARF) and the National Organization for Rare Disorders (NORD) launched the largest-ever study to research Fanconi anemia (FA), a patient-driven natural history registry that will result in a wide variety of clinical findings. Fanconi anemia currently has no cure.
The new study, “An observational… Read More
The National Organization for Rare Disorders (NORD®) is excited to announce that a new peer-reviewed manuscript written by members of our research team has been published as a leading article by the journal Pharmaceutical Medicine.
The paper, entitled “Establishing Patient Registries for Rare… Read More
Washington, DC, March 24, 2020–The National Organization for Rare Disorders (NORD®) is pleased to welcome Prashant Goel as the new Vice President of Information Technology, based in the Danbury, CT office. Prashant, who joined NORD in February, leads a team of professionals with extensive knowledge of developing scalable enterprise-level systems,… Read More
Washington, DC, February 28, 2020—The National Organization for Rare Disorders (NORD)®, the leading independent nonprofit organization representing over 25 million Americans with rare diseases, today launched the Undiagnosed Rare Disease Registry, a new study to collect de-identified information about hard-to-solve medical cases that will enable researchers to perform analyses at… Read More
Real-world evidence and compelling case studies bring to life the challenges facing the estimated 30 million Americans fighting to live better with rare disorders
Washington, DC, June 3, 2019—The National Organization for Rare Disorders® (NORD), the leading independent nonprofit… Read More
