NORD Publishes Information for Physicians and Patients on Three Rare Diseases

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Washington DC, Thursday, November 30 — The National Organization for Rare Disorders (NORD) has published new physician guides to promote diagnosis and treatment for patients with three rare medical conditions: hepatocellular carcinoma (HCC), acute myeloid leukemia (AML) and 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 are part of NORD’s ongoing educational programs to promote awareness among medical professionals and to support the need of patients and their families for non-technical information.

“With these conditions, as with all rare diseases, education of medical professionals and patients is extremely important. NORD’s information for healthcare providers is intended to facilitate timely diagnosis and optimal care. Our information for patients and caregivers helps them participate as informed and active partners in their care,” said Marsha Lanes, MS, CGC, a genetic counselor and medical editor on the NORD staff.

The new resources were made possible by an educational grant from Daiichi Sankyo, a global pharmaceutical company. The content of the materials was developed solely by NORD and the independent medical experts who served as authors or reviewers.

HCC is a type of liver cancer occurring more often in men than in women. Those affected tend to be adults age 50 or older. The prognosis for patients can vary depending on how advanced the cancer is at the time of diagnosis.

AML is a type of cancer that affects the blood and bone marrow. It can progress quickly and aggressively, and is rarely diagnosed in people under age 40.

PVNS is a disease in which tissue lining the joints and tendons in the body grows abnormally to form a noncancerous mass or tumor. The average age at diagnosis is 35 years.

The new physician guides and patient/family reports have been published on the NORD website at The website receives approximately 1 million visits per month and serves a broad audience including patients, caregivers, medical professionals, and the public.

The guides and reports are available free to all and may be read on the website or downloaded. NORD’s information is written or reviewed by independent rare disease medical experts with noted expertise on the specific topics.

NORD is a nonprofit organization that was established in 1983 by rare disease patient advocates. It provides advocacy, education, patient assistance programs and research on behalf of the rare disease community.

A disease is considered rare in the U.S. if it affects fewer than 200,000 Americans. There are 7,000 such diseases affecting approximately 30 million Americans or about 1 in 10 people.