<div style="color: rgb(34, 34, 34); font-size: small; letter-spacing: normal; line-height: 1.4;"><div style="line-height: 1.4;"><font face="Charter"><span style="font-size: 20px;"><b>Mysuru, Karnataka:</b> Rare diseases are what they sound like. They affect fewer individuals in a population, often one in 1,000 or 2,500. The definition varies from country to country but due to the lack of epidemiological data, India hasn't arrived at one so far. Multiple reports, however, suggest that 450 of the 7,000-plus rare diseases identified globally have been reported in the country, occurring in 72 to 96 million Indians. And yet India doesn't have a national policy to diagnose and treat rare diseases, foster R&amp;D in this field, and provide financial aid to the families of those who suffer from it, advocacy groups complain.</span><br><br><span style="font-size: 20px;">In 2017, the Union Ministry of Health and Family Welfare did pass the National Policy For Treatment of Rare Diseases. However, it never took off because of budgetary issues. This was followed by another draft last January but the patient advocacy groups have found it falling on many essential fronts.</span><br><br><span style="font-size: 20px;">In the absence of a policy, most families approach the court for intervention on humanitarian grounds. That's because a majority of these diseases have no cure, so they require lifelong treatment, the cost of which runs int</span></font><span style="font-size: 20px;">﻿</span><font face="Charter"><span style="font-size: 20px;">o tens of lakhs every year.</span></font></div><div style="line-height: 1.4;"><font face="Charter"><br></font></div><div style="line-height: 1.4;"><span style="font-size: 20px;"><font face="Charter">101Reporters takes you to the city of Mysuru to meet one such family whose child is suffering from Mucopolysaccharidosis Type I.</font></span></div><div style="line-height: 1.4;"><span style="font-size: 20px;"><font face="Charter"><br></font></span></div></div><div class="embed-container" align="center" style="line-height: 1.4;"><iframe width="640" height="360" src="https://www.youtube.com/embed/gNROCyn5i9k" frameborder="0" allow="accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture" allowfullscreen=""></iframe></div><div style="color: rgb(34, 34, 34); font-size: small; letter-spacing: normal; line-height: 1.4;"><font face="Charter"><span style="font-size: 20px;"><br></span></font></div><div style="color: rgb(34, 34, 34); font-size: small; letter-spacing: normal; line-height: 1.4;"><br></div>