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Behcet’s Association was founded in 2005 and registered as a private nonprofit organization with the Beijing Civil Administration Bureau on May 19th, 2014 as Beijing Paloma Behset’s Disease Care Center, the first nonprofit organization in China to focus on providing support, consultation, and information services for patients suffering from Behcet’s Disease. Our goal is to create an equal and respected social environment for Behcet’s patients.
Behcet’s Association first contacted and got to know Transparent Fish Fund in 2013 through other organizations that help patients with rare diseases and successfully received seed funding for hosting the first annual Chinese Behcet’s Patients Conference. The seed funding paid for part of the traveling costs for a Behcet’s patient who needed to travel from Beijing to Chongqing and back in order to attend the conference and for the printing costs for flyers, brochures, posters, banners, etc. that were used during the conference. The seed funding helped us host a successful conference. From that point on, Behcet’s Association and “TFish” grew together. At that time, Behcet’s Association was still only a small nonprofit, with all our costs paid for by volunteers’ and patients’ kind donations. We had never worked with any foundations, so the cooperation with TFish was Behcet’s Associations’ first time working with a foundation. Our cooperation with “TFish,” an organization that advocates for financial transparency, made a small nonprofit like ours more standardized. For example, at first, we disclosed our funding and expenditures monthly, without following up on each project that is going on. After working with TFish, we learned to write project updates each month, compile last month’s progress, and reorganize Behcet’s Association’s tasks and work. Compiling these updates is also a great opportunity to find materials we can use for flyers and project summaries. We now not only disclose the expenditures for each monetary donation, but also begin to reorganize and make transparent our work that sank beneath the surface. At the same time, under the guidance of Wang Jun from TFish, we began to adjust blog contents from the initial only sharing current events and activities to now telling the stories of our patients, having out patients share their thoughts, posting facts and Behcet’s Disease, and so on. These adjustments prove to be very meaningful for our organization’s development afterwards. While TFish taught us to make our financial records more transparent, they also taught us, as a nonprofit organization, how to publish our work and make ourselves more transparent. Behcet’s Association would like to thank TFish’s staff, especially Wang Jun, for all their help. Thank you! Behcet’s Patient Association was established in May 2005 and provides care and help services for behcet patients, aiming to promote understanding and respect to people with behcet among the public, eliminating discrimination and protecting their equal rights on medical care, education and employment. West Lake of Hangzhou is welcome tourists from all around the world. Among the crowd, there were some people wearing red t-shirt and holding red-and-white flag in the hand. They are a group of special tourists—Behcet’s Patient Association. On such a lovely day, they are Behcet’s patients coming from Zhejiang, Shanghai and Guangdong. They gathered here to advocate more people to understand and care people with Behcet. May 1st is international labor’s day. It is also the day when Behcet's Patient Association was first found. The activity was different from previous ones. With more tourists during the holiday, the patients walked 7 kilometers and distributed pamphlets to tourists along the way. They also gave brief introduction about the Behcet. Something special about the activity is the Behcet’s patients need courage to communicate with strangers. Though passing out flyers on the street is a challenging way to spread awareness about Behcet, they are passionate about this cause and their mission. Original article written by Yong Chen, translated by Maggie Li, and edited by Yanyan Zhang
 Behcet’s Patient Association was established in May, 2005. It provides care and help services for behcet patients, aiming to promote understanding and respect to people with behcet among the public, eliminating discrimination and protecting their equal rights on medical care, education and employment. A photo exhibition with the theme of 'Rare Diseases' was opened in Beijing. Famous CCTV hosts and the director of the China Rare Disease Development Center were invited. From February 28 to March 10, the exhibition was held in the Beijing Capital Mall Crystal. The whole exhibit was open to the public. At the opening ceremony, Wang Chong, one of our patients, her mother and a photographer came to the site and conducted interviews. Wang Chong went to view her photos and touched them with her fingers while she listened to her mother's introduction. A doctor was moved after seeing Wang Chong’s photos. After talking with the volunteers, I bought a book—I Want a Blooming Life. I gave suggestions for the development of the Behcet’s Patient Association and arranged activities for the distribution of posters related to the Association during the exhibition period. Original article written by Yong Chen, translated by Maggie Li, and edited by Yanyan Zhang
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