Wednesday, July 6, 2011
For the past few weeks, Meghan Tammaro, who manages PHA's international work, has been in touch with Gloria Huanghuan, a PH patient in China. Gloria is organizing a new PH association there - iSEEK - which she hopes will complement the work being done by her doctor, who founded PHA China.
As you watch the video (begins about 10 seconds in in Chinese with English subtitles), you are watching Gloria and the story of her experiences with PH and in trying to form a non-profit organization to help patients and their families. What you will see is a segment of a longer film, titled Slow Walker, that she is making to help build awareness of PH and other rare diseases. The film is applying for the Sundance Documentary Film Program. We wish this talented young woman much success in sharing her story worldwide.
We also wish China a speedy path in sorting out out its laws and regulations for rare diseases and making it easier for NGO's to register. What Gloria is doing can only help its citizens with rare diseases such as PH as they are being helped in 51 other nations around the world.