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.
“Transparent Paloma” Comes from “Transparent Fish”
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 Li 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 Li, for all their help. Thank you!
In 2014, Behcet’s Association is very honored to be selected as Transparent Fish Fund’s Best Associate Member. This honor encourages us and urges us on to continue following the idea of “Transparent Philanthropy Transparent Finances,” making the now officially registered Paloma Center more transparent and more aligned with TFish’s ideals, and developing into a standard nonprofit organization.
Also in 2014, Behcet’s Association received our second piece of funding support from Transparent Fish Fund for holding a steadfast belief in transparent philanthropy and continuously putting it into practice. We will definitely cherish this opportunity to work with TFish by using the money where it is most needed and by continuously believing in transparent finances and transparent philanthropy, carrying forward TFish’s ideas.
From 2013 to 2014, in the short period of a year, under the guidance of Transparent Fish Fund, Behcet’s Association became more mature and more transparent. We have also been working with more and more Chinese foundations and nonprofits that focus on rare diseases. We are most thankful for, however, TFish for their support during our initial period as micro-organizations, which not only includes financial support, but also includes helping us form a good idea about nonprofits and what we do. All this support will surely let Behcet’s Association go farther and the Paloma fly higher.
Behcet’s Association would like to express our upmost respect for everyone at Transparent Fish Fund!
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