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Sep. 24, 2015

TOPIC: Medical, Research

Rare Disease of the Day

Posted by Lisa Sencen

Today’s Rare Disease of the Day is:


Von Hippel-Lindau disease (VHL) is caused by a gene mutation which frequently induces both nonmalignant tumors and malignant tumors (or cancers) that can spread to other organs (become metastatic). Tumors may develop in up to ten different parts of the body. Many of these tumors involve the abnormal growth of blood vessels in different organs of the body. Most of these tumors are benign, meaning that they stay in the same organ where they began. However, VHL tumors in the kidney and pancreas can grow to a stage where they become “malignant,” meaning that the cancer can spread to other parts of the body.
Learn more about today’s Rare Disease of the Day here. A new day means a new rare disease.
NORD’s Rare Disease of the Day campaign is automatically generated to select one of the 1,300 rare diseases, disorders and syndromes in the Rare Disease Database. Rare Disease of the Day is just one of the ways that NORD is educating patients, doctors and the general public about rare diseases as part of our mission.  A rare disease is defined in the U.S. as a medical condition that affects fewer than 200,000 people.  NORD and the NIH Office of Rare Disease Research use “disease” and “disorder” interchangeably to encompass the approximately 7,000 conditions that are categorized as rare. Syndromes that affect fewer than 200,000 Americans may be considered rare.  Combined, rare conditions affect 30 million Americans, or one in 10 people, the majority of whom are children.  So far, only about 5 percent have an FDA-approved treatment.