Experts pitch for policy on rare diseases

Medical research

The announcement was made Tuesday to coincide with the national awareness campaign Rare Disease Day.

Rare and ultra-rare diseases, also called orphan and ultra-orphan diseases, as the names imply, affect very small numbers of patients - say, fewer than 200,000 people at any given time, according to the US definition, and less than 1 in 2000, according to European definition.

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There are an estimated 70 million rare disease patients in India and 350 million worldwide and this year's slogan With research, possibilities are limitless is a call to action to all stakeholders to invest in research across the spectrum so that rare disease patients and their caregivers can look forward to a better quality of life. Research, the focus of Rare Disease Day 2017, can not be more timely and appropriate given the growing number of rare disease patients and the challenges they continue to face says the Indian Society for Clinical Research (ISCR).

While the more prevalent diseases such as cancer, heart disease, and stroke understandably take precedence in science's "things to do list", it's crucial these millions of people with rarer diseases don't get left behind. "We urge the State government to set-up a genetic lab, which will go a long way in quick diagnosis of such rare diseases, especially among children", says Dr. S. Radha Rani, a member of IORD.

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Summit Therapeutics PLC (NASDAQ: SMMT LON:SUMM) has hailed the tenth annual Rare Disease Day, 28 February 2017.

Rare diseases were equally prevalent in both developed and under-developed countries an equal opportunistic disease, the organisation said. "The ideas that shaped this legislation came from those who it will help most-rare disease patients". As part of the campaign, which will run until March 6, the agency has wrapped the inside and outside of a train vehicle on the Massachusetts Bay Transportation Authority (MBTA) Red Line with facts about rare diseases and zebra stripe branding. "World Rare Disease Day raises awareness and solidarity, and our company is thrilled to be a year-round stakeholder by defining new rare diseases, improving diagnostics, generating new biological knowledge and inspiring novel targeted drug strategies".

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