RARE DISEASE VS. COVID: Are Obstacles Overcomable?
The multinational "Rare Workshop" webinar was successfully held on July 26, 2020.
Recent trends in the field of rare disorders in China and globally were highlighted during the meeting. The webinar was organized by Semantic Hub LLC working in AI (natural language processing) area and providing analytical services including early detection of patients to pharmaceutical companies, in the field of rare and severe diseases. The Chinese Organization for Rare Disorders (CORD) and I-Campus (international life-science Innovation Park of AstraZeneca China) took on the role of webinar co-organizers. The webinar was a part of online and offline events hosted by Semantic Hub for all industry stakeholders and patient organizations to discuss the status of things with rare disorders in various countries.
Professional community experts from China, EU, Russia and representatives of patient advocacy groups expressed their opinion on how COVID-19 has affected patients with rare diseases and how it has influenced R&D in rare diseases. A lot of industry experts joined the discussion. They represented the leaders in the field of fighting severe diseases, in China and globally, such as AstraZeneca, Roche, Sanofi, Takeda, Novartis, Biogen, Merck, Sperogenix, Bayer, BMS, Ipsen, Teva, Esco Ventures, RPharm and other companies.
Ways to improve understanding of rare patients' journey with the help of AI analyzing Patient Voice were presented by Ms. Irina Efimenko (Ph.D., Semantic Hub Global CEO and Founder). She explained why it is important to gather Real World Evidence in rare diseases in a new reality, what types of data should be reviewed and how they could be applied.
Russian and European patient communities' point of view was presented by the leaders of patient advocacy groups.
The next event is planned to be held in the EU and it will be aiming to enhance awareness of both industry experts and patient community about existing problems and ways of solving them as well as to ensure exchange of stakeholders' opinions.