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Oct 16, 2013

China Dispatch: Rare Disease Collaborations

Sharon Terry, president and CEO of the Genetic Alliance, brings us her latest from Shandong Province.

China Dispatch: Rare Disease Collaborations

Sharon Terry follows up her trip to the Beijing Children's Hospital (seen above) with a trip to Jinan of east China's Shandong Province.

  • GEN’s China Dispatches are issued by Sharon F. Terry, president and CEO of the Genetic Alliance, a network of more than 10,000 organizations, including 1,200 disease-advocacy organizations, that enables individuals, families, and communities to reclaim their health and become full participants in translational research and services. A pioneer of consumer participation in genetics research, services, and policy, Sharon F. Terry serves a leadership role not only at the Genetic Alliance, but also at the Genetic Alliance Registry and Biobank and at PXE International, a research advocacy organization for the genetic condition pseudoxanthoma elasticum (PXE). Here, she follows up her recent visits to Beijing Children's Hospital and the Peking University First Hospital with a trip to Shandong Province.

    Up early, Zhe met us in our hotel lobby. He took us, and all of our baggage, to the high-speed railway for our trip to Jinan of east China's Shandong Province. On the way, we stopped at the Temple of Heaven, a World Heritage Site. Built in the Ming Dynasty, it is an architecturally symbolic set of structures, which illustrate an agricultural cosmology. The symmetry of the Temples and Hall told of the dependence on the year, months, and various physical elements. It is a testament to human ingenuity that we now try to apply to health and disease. I like to think we are looking for the patterns in the biological world enough to manipulate them for health.

    We were met at the train station by Yong Zhou, an associate professor of dermatology in Beijing. He originally comes from Shandong, and so is accompanying us on this part of our journey. We arrived at 200 (smooth) miles per hour in Shandong and were taken to a VIP hotel. In fact, the Communist party owns it and the Chairman stays here when he is in the area. This is a beautiful province, home to mountains, lakes, and springs.

    The only official event of the day was dinner. Our host was Professor Jinxiang Han, of Shandong Academy of Medical Sciences. This was a somewhat more formal dinner than others. We engaged in very meaningful dialogue from the moment we sat down. I had met some of our dinner companions at an international meeting in Tokyo the year before. Our conversation went straight to ways in which we might collaborate. Shandong has declared that it will be the rare disease center for all of China and has been actively working on ways to diagnose and seek treatments for more than 1,000 diseases. Their interest in meeting with us is two-fold: 1) to learn how to create, support, and engage patient groups, and 2) to better understand mineralization, something Jouni Uitto is an expert on.

    The many different dishes interlaced the conversation, and they matched each other in diversity. At times we were eating cocoons and speaking of Mao and Obama, and other times, enjoying steaming dumplings and parsing the best way to sequence large numbers of individuals. The discussion ranged far and wide despite the challenge we had translating back and forth from English to Mandarin.

    Again, there are enormous numbers of individuals affected by rare diseases here. It is estimated that 30 million people in the U.S. are affected with rare conditions. Extrapolating that to China suggests that there may be 140 million people affected by rare diseases here in China. Our hosts assure us that the emerging networks of hospitals linked across the country are making finding individuals for research easier. They are building a biobank of all rare conditions, and at the present time have more than 1,000 for which they can perform diagnosis and have banked samples. Tomorrow we will establish Genetic Alliance China at the Shandong Academy of Medical Sciences. This is not the first time Genetic Alliance has contributed to other Genetic Alliances in the world. We are co-founders of the International Genetic Alliance. And in 2006, we worked with a dozen patient groups in Brazil and helped them establish the Brazilian Genetic Alliance. Rare diseases, and understanding human health in general, know no boundaries, and so this increased ability to collaborate across boundaries is important and necessary. It is certainly not without its challenges, and tomorrow we will explore some of those.



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