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"When our children were diagnosed at the ages of 4 and 6 with orphan diseases - we realized that the health system does nothing for us - so we took the responsibility into our own hands"

Sharon Terry, president and CEO of Genetic Alliance and her husband, Patrick Terry, president of GMPO Orphan spoke at the IATI BIOMED conference

drug search. Illustration: shutterstock
drug search. Illustration: shutterstock

In the opening plenary of the IATI BIOMED conference that began yesterday and will continue until this Thursday (May 24-26), at the David Intercontinental Hotel in Tel Aviv, Patrick and Sharon Terry participated, he is the president of GMPO ORPHAN, and she is the president and CEO of Genetic Alliance, who serve as an example of social activism for The future of our health. "Our children were diagnosed at the age of 6 and 4, with orphan diseases and no one did anything for us - so we decided it was our responsibility to do something about it. We asked for access to the libraries of Harvard University, and there we sat up nights and learned about the disease and all its derivatives," says Sharon. "I was in the manufacturing industry and created biotechnological infrastructure for years, and the thing that bothered me the most was the lack of information sharing, especially in matters of gene diagnosis - we did experiment after experiment with the knowledge we acquired, we became partners in the research process," said Patrick. "Many elements in the health system do not share information, and in general the system is very conservative and resists changes, but the time has come for the patient to become a partner in the process."

François Maisonrouge, senior operations manager at Evercore Partners: "Everything I know from the life sciences industry - I know from Israel. It is a great honor for me to be here at this conference, I was here for the first time when Israel was 28 years old, but we couldn't even believe that Israel would look like this in such a short time."

Ruthi Alon, co-chair of the conference and general partner in the venture capital company Pitango, emphasized: "It gives me great pleasure to invite the people of life sciences from around the world and from Israel to come and celebrate 15 years of activity with us. This year, we are introducing a new and special format that will increase interactions between young and mature companies and old and new friends on specific topics and tracks of interest, with the aim of paving the way for business collaborations. Participants will be able to enjoy round table discussions, panel presentations, networking opportunities and product demonstrations, analysis of trends and innovation that are shaping the future of healthcare systems and the life sciences ecosystem."

Dr. Benny Zaevi, co-chairman of the conference and managing partner at the venture capital company Tel Aviv Venture Partners added that "Israel has built itself as a leading innovation center in medical research and development. The entrepreneurial spirit of the country, along with its academic excellence, adds to strengthen the biomed industry, as it matures and grows. It should be noted in recent years the flourishing of innovations in the field of information in health systems and the use of digital tools in medicine, which are based on Israel's strength in the sciences of thought and engineering, in combination with advanced digital health systems.

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