Show support for people living with a rare cancer

Throughout the year there are many disease awareness days. While some of these awareness days touch people personally, many others pass by unnoticed.

A group of diseases that are commonly overlooked, undertreated and misdiagnosed are known as rare diseases. In the United States, rare diseases are classified as those that affect fewer than 200,000 people; however, as a whole, they present a major health problem since there are more than 6,000 rare diseases, affecting a total of 25 million Americans. It is vitally important to help and support those suffering from these less common but just as life-threatening diseases.

In support of rare disease awareness, hundreds of patient organizations from more than 40 countries came together on Feb. 28 to honor Rare Disease Day. These groups held events to drive worldwide awareness of rare diseases under the umbrella theme “Rare But Equal.” By acting simultaneously, the voice of patients with rare diseases and their families was amplified throughout the world.

Many forms of cancer are considered to be rare diseases and need specialized attention by health care professionals and patients. Examples of uncommon, difficult to diagnose and treat cancers are gastrointestinal stromal tumors (GIST) and neuroendocrine tumors (NET).

“Promoting awareness for rare cancers like GIST and NET is the key to helping diagnose these diseases at an earlier stage,” says Sukirti Bagal, MD, MPH, Chief Medical Officer and Director of Medical Affairs at National Organization for Rare Disorders (NORD). “If these patients are not diagnosed at the proper time their disease will mostly likely advance or spread to other parts of their body.”

Understanding rare cancers
GIST is a rare, life-threatening cancer of the gastrointestinal (GI) tract. Most GIST develops in the stomach or small bowel. They often do not cause any specific symptoms, making it difficult to diagnose and to treat. The exact number of people diagnosed with GIST each year is not known. In the U.S. alone, the incidence of GIST is estimated to be up to 6,000 new cases each year.

NET comes from cells that can produce and secrete a variety of hormones that regulate certain functions in the body. Symptoms of NET are often vague, like stomach pain, hot flashes or wheezing, and patients with NET are often misdiagnosed. In fact, it can take five to seven years for patients to receive an accurate diagnosis, when the disease may have progressed to advanced stages. Recent data shows that in 2004, NET cancer was diagnosed in approximately five cases in 100,000 people. However, the incidence of NET is increasing dramatically, having increased more than five-fold in the past 30 years.

“People living with rare cancers often feel overlooked, not only by the medical community, but by society in general,” says Peter L. Saltonstall, president and CEO of NORD . “There are many awareness days on the calendar, but Rare Disease Day is unique. It’s a day when millions of patients and families around the world remind us that continuing research to develop new treatments is greatly needed.”

Online sites and social networking groups can often provide valuable resources and offer additional support that many rare disease patients may need. For more information on GIST and NET, you can visit the Novartis Pharmaceuticals Corporation-sponsored websites below:

* GIST Earth ( is a global social networking community designed to help patients feel less alone by providing a portal for them to privately share, support and connect with others like themselves.

* GIST The Facts Info ( is an information portal for anyone suffering from the disease.

* The NET Community ( was formed to help patients and caregivers better understand NET, including resources about living with the disease.

To learn more about rare diseases, get involved or tell your story, visit

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