Summit Therapeutics hails Rare Disease Day

Francis Osborne
March 1, 2017

Every year, the last day of February is observed as Rare Disease Day to raise awareness of rare diseases among general public, policy makers, researchers and health professionals. According to the World Health Organisation, a disease that is found in less than 6.5 - 10 per 10,000 people is defined as rare.

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. "By releasing the film publicly, we hope to not only continue to empower and unify people living with rare diseases, but to also educate the public about this common struggle faced by millions of Americans". That explains why 43% of individuals with a rare disease is treated only for symptoms, with inadequate care, for the most part. This creates tremendous inequalities for those diagnosed with orphan diseases.

With most rare diseases having no cure or even effective treatment available, living with or having someone who has a rare disease can be extremely traumatic both physically and mentally. Thus, it is believed that educating the patient and physicians at medical congresses is an important outreach to the rare disease community to facilitate proper and prompt diagnoses. "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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The first-ever community-driven public service announcement launched today to kick off the campaign, driving viewers to DoYourShare.com, a supporting website featuring community stories, an opportunity for those living with a rare disease or those involved in the community to share their story, and ways to get involved in areas ranging from awareness and advocacy to research and donation.

But while there's a lot of work to be done, the past few years have shown progress when it comes to rare disease research.

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