Rare diseases are those which affect a small percentage of population. They are usually chronic and progressive and because of their complexity, it becomes very difficult to diagnose and treat them.
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Medical treatment has made numerous advancements in the recent past. These breakthroughs have led to better and more effective diagnosis and treatment of diseases, even of those which were considered untreatable just a few years back. This is primarily true in the case of rare diseases.
Rare diseases are those which affect a small percentage of population. They are usually chronic and progressive and because of their complexity, it becomes very difficult to diagnose and treat them. Fortunately, there have been various innovations due to which now there are targeted therapeutic treatments available.
Although this is good news, flip side is that the treatment which is available for these diseases is often expensive and hence, cannot be afforded by most of the patients. The treatment cost starts from a few thousands and runs into lakhs and crores depending upon the patient. It is a fact that, traditionally, patients suffering from rare diseases have had very little hope of receiving appropriate treatment.
To further add to the burden, these patients are not covered under insurance. While the government is taking steps in this direction by proposing interventions like setting up of corpus funds for diagnosis, treatment and supportive care (most of the patients require supportive care like physiotherapy, monthly tests) it is clear that the government alone would not be able to take care of it. This is where the role of…