February 2011 Alone we are rare. Together we are strong." Slogan of Rare Disease Day ---February 29, 2012. Roughly 7,000 rare diseases/disorders have been identified as affecting the human race. Because they are rare, it can be a real challenge for a person to be accurately diagnosed. Finding effective treatments, especially medicine, can also be a challenge---and for the same reason. Rareness. If you have a rare disease, know someone who … [Read more...]
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PDFLearning about an undiagnosed condition in a child
Many disabilities and disorders go undiagnosed, even after extensive evaluation and medical testing. If this is your situation, you may want to read this article from the Human Genome Project.http://www.genome.gov/17515951 … [Read more...]
Tips for those with an undiagnosed condition
Despite years of investigation and struggle, many disabilities and disorders are not diagnosed. What is it? If you live with an undiagnosed condition, or know someone who does, this article may be helpful.http://rarediseases.info.nih.gov/GARD/TipsForAnUndiagnosedCondition.aspx … [Read more...]
The Undiagnosed Disease Program at NIH
NIH stands for the National Institutes of Health, which involves itself deeply in medical research on diseases and disabilities. It operates The Undiagnosed Disease Program, which focuses its work on trying to give people a diagnosis of their long-term "mystery" condition. http://rarediseases.info.nih.gov/Resources.aspx?PageID=31 … [Read more...]
