Rare Disease Day 2009, Feb 28
Rare Disease Day 2009, Feb 28
A collection of photos of patients living with a Rare Disease who participated in the EURORDIS 2008 photo competition. More: www.eurordis.org
Video Rating: 4 / 5
Rare Diseases
Erin Anderson’s Eng 104 project
Alzheimer’s Disease – My Story
This Is A Real Case Study, Written By An Alzheimer’s Sufferer Sharing His Hurts, Frustration And Desperation. This E Book Brings Hope For Fellow Sufferers.by Following The Program Designed By The Author, It Shows How To Retain New Memories And Buy Time.
Alzheimer’s Disease – My Story
Mesothelioma, One Rare Disease in the Spotlight
Article by Agatha Simona
Mesothelioma is one of more than 7,000 rare diseases that will be in the spotlight on National Rare Disease Day on February 28th. The National Organization for Rare Disorders (NORD), a consortium of patient organizations, is sponsoring the day to draw attention to mesothelioma and other rare conditions that affect some 30 million Americans.Benign mesothelioma is not a form of cancer. It is a rare disease that is non-malignant and can easily be approached immediately after detection. Once benign mesothelioma is detected, patients should immediately get tested for other asbestos-related diseases. Ongoing testing is also recommended for other asbestos-related diseases so that early detection can be addressed immediately.
In the U.S., a disease is defined as rare or ‘orphan’ if it affects fewer than 200,000 Americans at any given time. The Centers for Disease Control estimates that fewer than 3,000 people are diagnosed with mesothelioma each year. Disturbingly, however, the incidence of mesothelioma has risen over the past 20 years in the U.S., and is still rising in Europe.
Malignant mesothelioma is the most aggressive and deadly of the asbestos-related diseases. It effects the membranes (mesothelium) encasing the lungs, heart or abdomen and typically spreads quickly. Because early symptoms can be subtle, mesothelioma is often not diagnosed until the disease has progressed to a point where it is more difficult to treat. Compounding the problem is that mesothelioma is also highly resistant to traditional therapies. While research is ongoing to find effective alternative treatments, mesothelioma, like many rare diseases, receives far less research funding than other more common conditions. As a result, there are not only fewer treatment options, but also fewer experts in the disease.
National Rare Disease Day, an international event held on the last day of February each year, is designed to bring these funding and awareness disparities to the attention of lawmakers and the public, while raising the profile of conditions like mesothelioma. This year’s theme “Rare but Equal” highlights that message. A total of forty-six countries participated in the event last year. This year in the U.S., National Rare Disease Day plans include:
• A “Write Your Rep” campaign to encourage members of Congress to join a new Rare and Neglected Diseases Caucus for discussion of issues related to rare diseases and orphan products.
• Creation of a database of physicians with expertise on specific rare diseases.
• Creation of a “Rare Disease Video Library” of 1 to 2 minute flipcam-style videos made by patients or family members.
About the Author
Mesothelioma cancer patient resource with questions and answers about mesothelioma, a deadly cancer caused by asbestos exposure.
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