Experts pitch for policy on rare diseases

Experts pitch for policy on rare diseases

Glyn Edwards, Summit's chief executive, said: "We applaud EURORDIS, the organisation representing rare disease patients in Europe, for bringing an annual spotlight to the plight of millions of people affected by rare diseases and in this year, recognising the vast impact that research is having and will continue to have for those living with rare diseases". However, many people do not know that there are actually many rare diseases. The center's team, a group of pharmaceutical and clinical research professionals with experience in the areas, will focus on "addressing the specific challenges presented by the small, widely dispersed populations of rare disease and pediatric patients", the release stated. "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".

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.

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"There are still no known cures for majority of rare diseases and treatments costs are extremely high, more so in India". Experts say thar these are rare diseases in which patients are often misdiagnosed with other diseases prior to getting a definitive diagnosis. "Clinical research will help us find better and more effective treatment", Suneela Thatte, President of ISCR told PTI. The event has been marked worldwide since 2008, and is meant to draw attention to the over 7,000 rare conditions that have been specifically identified as an orphan disease.

ISCR said research can lead to the identification of previously unknown diseases, can increase understanding of diseases, enable doctors to give a correct diagnosis, lead to the development of new innovative treatments and even reduce costs for healthcare systems and improve the quality of life of patients and their families. Rare diseases and disorders are less likely to receive the funding and awareness required to accelerate research.

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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.

In order to raise awareness about rare diseases and their impact on patients and their families' lives, Rare Disease Day is observed on the last day of February each year.

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