{"id":3851,"date":"2019-11-07T21:33:34","date_gmt":"2019-11-07T21:33:34","guid":{"rendered":"https:\/\/vistasolmedicalgroup.com\/?p=3851"},"modified":"2019-11-07T21:33:36","modified_gmt":"2019-11-07T21:33:36","slug":"rare-diseases-more-common-than-we-think","status":"publish","type":"post","link":"https:\/\/vistasolmedicalgroup.com\/rare-diseases-more-common-than-we-think\/","title":{"rendered":"Rare diseases more common than we think"},"content":{"rendered":"\n
Rare diseases are by their very nature obscure and unknown, falling through the cracks when it comes to research budgets and treatment development. But now, a study has shown they are more common than we think.<\/strong><\/p>\n\n\n\n The United States classifies a rare disease as one that affects fewer than 200,000 people. However, all together, rare diseases in the U.S. affect 25\u201330 million people.<\/strong><\/p>\n\n\n\n While the diseases themselves may be rare, this significant figure highlights just how many people are living with diseases that get little attention due to their singularity.<\/strong><\/p>\n\n\n\n Until the recent study, scientists had no real concept of the prevalence of rare diseases globally.<\/strong><\/p>\n\n\n\n The few studies into the incidence of rare diseases have seldom looked at population registries, making it hard to establish prevalence with precision.<\/strong><\/p>\n\n\n\n As in the U.S., most countries do not track rare diseases. In fact, they document very few even after diagnosis. This makes it tricky to work out the exact number of rare diseases or how many people are living with them.<\/strong><\/p>\n\n\n\n Now an analysis of the Orphanet database, which is a comprehensive record of the incidence of rare disease, indicates that over 300 million people globally are living with a rare disease.<\/strong><\/p>\n\n\n\n ‘A low estimation of the reality’<\/strong><\/p>\n\n\n\n “In all likelihood, our data represent a low estimation of the reality. The majority of rare diseases are not traceable in healthcare systems, and in many countries, there are no national registries,” says Ana Rath, the director of Inserm US14 in Paris, France.<\/strong><\/p>\n\n\n\n The National Institute for Health and Medical Research (INSERM) in France established Orphanet in 1997 to improve knowledge of rare diseases and boost awareness, diagnosis, and treatment of people living with them.<\/strong><\/p>\n\n\n\n Today, a consortium of 40 countries work together to pool data on rare diseases, making it the most comprehensive source of data on the topic.<\/strong><\/p>\n\n\n\n Researchers hope that by highlighting the number of individuals impacted by a rare disease and showing that rare disease is “not so rare,” public health policies at a national and global level will begin to address the issue.<\/strong><\/p>\n\n\n\n “Given that little is known about rare diseases, we could be forgiven for thinking that [those living with them] are thin on the ground,” says Rath. “But when taken together, they represent a large proportion of the population.”<\/strong><\/p>\n\n\n\n According to the Genetic and Rare Diseases Information Center (GARD), there may be as many as 7,000 rare diseases. Experts often refer to these diseases as orphan diseases because drug companies have tended to neglect them by excluding them from their drug research and treatment development budgets.<\/strong><\/p>\n\n\n\n