News from NORD

NORD Publishes Three New Free Rare Disease Guides for Physicians


To promote early diagnosis and optimal treatment for patients, NORD has published three new guides for physicians. They are The Physician Guide to Hepatocellular Carcinoma (HCC), The Physician Guide to Acute Myeloid Leukemia (AML), and The Physician Guide to Pigmented Villonodular Synovitis (PVNS).

NORD has also published corresponding reports on the three conditions for patients and their families. The physician guides and patient reports were made possible by an educational grant from Daiichi Sankyo, a global pharmaceutical company. The content of all the resources was developed by NORD and independent medical experts.

“With these conditions, as with all rare diseases, education of medical professionals and patients is extremely important,” said Marsha Lanes, MS, CGC, a genetic counselor and medical editor on the NORD staff. “NORD’s education for health care providers is intended to facilitate earlier diagnosis and optimal treatment.”

The Guide to HCC was written by Jonathan M. Schwartz, MD, Professor of Clinical Medicine, Division of Gastroenterology and Liver Diseases, Albert Einstein College of Medicine, Montefiore Medical Center. The Guide to AML was written by Amy E. DeZern, MD, MHS, Assistant Professor of Oncology and Medicine, Division of Hematologic Malignancies, Johns Hopkins Sidney Kimmel Cancer Center. The Guide to PVNS was reviewed by Tom Scharschmidt, MD, FACS, MBOE, Associate Professor, Department of Orthopedic Surgery, Ohio State University Wexner Medical Center.

The physician guides and patient reports are free and available to all on the NORD website, which receives approximately one million visits per month from patients, caregivers, medical professionals, and the public.

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