Rare Disease Day 2012 Highlights the Power of Solidarity

In an effort to increase global awareness of the struggles of people suffering with rare and difficult to diagnose diseases, on February 29, 2012, there will be a global observance of Rare Disease Day. While the U.S. observance of Rare Disease day is spearheaded by the National Organization for Rare Disorders (NORD), the idea originated in Europe in 2008 and is observed in over 60 countries worldwide. The theme selected for the 2012 observance of Rare Disease Day is "Solidarity" and the corresponding slogan is "Rare but Strong Together." This year's events also benefits from the fact that the date itself, February 29th, only occurs once every 4 years. There are over 600 American partner organizations that are organizing activities in support of Rare Disease Day, including a symposium sponsored by the NIH and opportunities to submit artwork and essays elaborating on the 2012 theme for the "Visions of Solidarity" campaign. There are also numerous other unique observances across the country which are highlighted on the official Rare Disease Day USA website, such as dog sled races, marshmallow roasts, wine tastings, and even bingo. There will also be a corresponding Rare Disease Patient Advocacy Day coordinated by the FDA on March 1st. In America, any disease that affects less than 200,000 people is classified as a rare disease, and according to the National Institutes of Health (NIH) there are almost 30 million Americans suffering from rare diseases. These patients face numerous challenges, and are often misdiagnosed numerous times before the true source of their symptoms is identified. The diagnosis process alone has been shown to take as long as 5 years for some patients. Mesothelioma is a rare form of cancer, diagnosed in 2,000 to 3,000 Americans annually. This fatal form of cancer is caused almost exclusively by exposure to asbestos. Patients diagnosed with this cancer are honored and supported through events such as the observance of Rare Disease Day. Rare Disease Day is an effort to help patients suffering from rare diseases deal with feelings of isolation resulting from their difficulty in finding doctors familiar with their disease and the lack of proven treatments, which often results in difficulty with medical insurance reimbursements. Of the almost 7,000 rare diseases that have been identified in the United States, a much smaller number, around 200, have approved treatments. To help patients facing rare diseases deal with the challenges that they face, non-profit organizations like Patient Services, Inc. (PSI) and the National Organization for Rare Disorders (NORD) have stepped in to raise funds to help patients and create more awareness of their struggles. The tremendous level of support being shown for patients suffering from rare diseases by the joint efforts of government agencies, non-profit groups, and private sector business partners has provided a truly inspiring backdrop for the 2012 Rare Disease Day, creating hope for a better future for patients suffering from rare diseases and their families. References: Previous: Zimbabwe may revive asbestos mines Next: Italian Court Convicts Duo For 2,200 Counts Of Asbestos Exposure