Mesothelioma Research One Focus of Rare Disease Day

Rare But Real: Stone Man, Tree Man, Wolf Man...

Today's interim report for the National Rare Disease Plan reveals that the State spent almost €1.7m of projects for people with rare diseases past year. Mr.de Boer adds that together with their partners at the Leiden Bio Science Park along with many others around the world we are inspired by the stories of people affected by rare diseases and hope many more will join us in our quest to find treatments for all of them.

There are 70 million rare disease patients in India and 350 million rare disease patients worldwide. Thanks to this celebrity-fueled craze, this "rare disease" was shoved under the public's eye and received $115 million dollars in funding donations in just 30 days, helping provide a major genetic breakthrough towards understanding the disease.


Summit Therapeutics PLC (NASDAQ: SMMT LON:SUMM) has hailed the tenth annual Rare Disease Day, 28 February 2017. That explains why 43% of individuals with a rare disease is treated only for symptoms, with inadequate care, for the most part. There are more than 7,000 known rare diseases, and only about 10% have approved treatments available to patients. Lack of awareness and scientific knowledge in rare diseases often leads to misdiagnosis or late diagnosis and delayed treatment. In 2015, 47 percent of novel new drug approvals were for rare diseases, and 566 medicines are in development for patients with rare diseases.

"With a great majority of rare diseases touching children", Kaucic said, "we believe our approach will enable us to be a more connected and active partner". "We need to create more awareness about rare diseases and impress upon the government the need to focus on an Orphan Drug Policy for rare diseases", said Prasanna Shirol, Co-Founder, Organisation for Rare Diseases India (ORDI) and father of a patient with Pompe Disease. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives. 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.

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