(This article is written by Prof Ramaiah Muthyala, IORD CEO & President and first appeared in the portal Pharmaclick.co.in in its blog section. The original article can be accessed here) Recent fundraising efforts by some desperate parents of Pompe disease (Glycogen storage disease type II) to buy expensive medicines and prominent associations raising funds viaRead more
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Hyderabad: While there are 7,000 recorded rare diseases, it is an uphill task to identify a patient with a rare disease. As per the Indian Organization of Rare Diseases (IORD), it takes an average of 4.8 years for a rare disease patient to be diagnosed, while the maximum time taken could be 20 years asRead more
Hyderabad: The draft of the National Policy for Rare Diseases introduced by the Union government on January 13, this year, was much debated in medical circles due to the suggestion of using crowdfunding as a method of addressing funding issues. Even as the world observes World Rare Disease Day, several patient groups and experts sayRead more