Rare Disease Day Highlights the Plight of the Mesothelioma Community


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MesotheliomaHelp will  once again join the National Organization for Rare Disorders (NORD), and countless other organizations, in its goal to raise awareness of the more than 7,000 rare diseases on Rare Disease Day. For the 10th year, on February 28, NORD will focus a spotlight on rare diseases as a global public health concern. Mesothelioma, an asbestos-related cancer, is one of the rare, or “orphan,” diseases or conditions affecting one in ten Americans.

In the United States, an orphan disease status is assigned to a disease or disorder if it affects fewer than 200,000 Americans at any given time. In the case of mesothelioma, 3,000 Americans are diagnosed with the disease each year.

This year’s theme for Rare Disease Day is research. Research brings hope to people living with rare diseases and while there is ongoing research to find new treatments or a cure, many of the diseases still do not have effective treatments. In fact, according to the organizers, “95% have no treatment with ZERO CURES.” There is  no cure for mesothelioma and the prognosis is often just one year.

Rare Disease Day is an annual event observed worldwide on the last day of February dedicated to raising awareness among the general public and decision-makers about rare diseases and the impact on patients‘ lives. The day was started in 2008 by EURORDIS-Rare Disease Europe. In 2017, more than 90 countries participated, including France, Canada, Greece, and first time participants Botswana, Nigeria, Senegal, and Sudan.

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“Building awareness of rare diseases is so important because 1 in 20 people will live with a rare disease at some point in their life.”

The organizers want to educate the public about the inequalities in medical care suffered by people with orphan diseases. According to NORD, patients with orphan diseases are often faced with difficulty in finding medical experts, delay in receiving an accurate diagnosis, and access to few, if any, treatment options. In the U.S., malignant mesothelioma patients often have to travel to large cities where the mesothelioma experts practice in order to receive adequate treatment.

Due to the relative rarity of mesothelioma, and other orphan diseases, managing the disease and trying to find appropriate treatment can be overwhelming to the patients and their families. In fact, according to government statistics, between 85 and 90 percent of orphan diseases are serious or life-threatening, yet only about 200 of them currently have any effective treatments.

NORD’s motto, “Alone we are rare. Together we are strong.”, shows how everyone can make a difference. Please do your part to help raise awareness for all rare diseases.

Rare Disease Day 2018 activities in the U.S. include state legislature awareness events, a Handprints Across America photo gallery on the national website, and events in communities across the U.S.

For more information about Rare Disease Day activities in the U.S, see www.rarediseaseday.us.  For information about global activities, see www.rarediseaseday.org.

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