[Nfb-krafters-korner] FW: Viewing opportunity, Tues., Sept 11 on PBS/WHUT: RARE, A film depicting patient advocacy and NIH clinical research

[Powers, Terry (NIH/OD/DEAS) [E]]

One of our members has this disease.  Sorry if this is off topic.

Terry
 

-----Original Message-----
From: MacDougall, Raymond (NIH/NHGRI) [E] 
Sent: Monday, September 10, 2012 12:41 PM
To: NIH-STAFF at LIST.NIH.GOV
Subject: Viewing opportunity, Tues., Sept 11 on PBS/WHUT: RARE, A film depicting patient advocacy and NIH clinical research

At 9pm on Tues., Sept. 11, PBS/WHUT will air a repeat broadcast of the new film RARE. 

Filmed in part at the NIH Clinical Center and depicting research in NHGRI's Medical Genetics Branch, the 1-hour, award-winning documentary traces several years' effort by the Hermansky-Pudlak syndrome (HPS) patient advocacy community who rally behind NIH researchers conducting a therapeutic drug trial. 

The film documents the perseverance and commitment of HPS patients and their families along with the NIH medical research team headed by Dr. William Gahl, NHGRI clinical director and head of the human biochemical genetics section.  Dr. Gahl's team identified two of the four known genes responsible for HPS, which is characterized by albinism, bleeding and lung disease. The film makers provide an intimate perspective on the collaboration among the HPS advocacy community and NIH researchers. 

For those outside the Washington, DC viewing area, additional air dates and viewing areas include:
Sept. 11
San Francisco, Oakland, San Jose - 11:00 pm - KQED Dayton, OH - 11:00 pm - WPTD station 16.2 Spokane, WA - 3:00 pm - KCDTDT2 Spokane, WA - 8:00 pm - KCDTDT2 Spokane, WA - 3:00 pm - KUIDDT2 Spokane, WA - 8:00 pm - KUIDDT2 Boise, ID - 4:00 pm and 9:00 pm - KAIDDT2 Idaho Falls, ID - 4:00 pm and 9:00 pm - KISUDT2 Twin Falls, ID - 9:00 pm - KIPTDT2 Monterey-Salinas, CA - 11:00 pm - KQETDT2 

Sept. 13
Dayton, OH - 4:00 pm - WPTD station 16.2 

Sept. 20
Indianapolis - 9:00 pm - WFYI

For a film trailer and more about the film project, visit http://www.rarefilm.org/    

For more about the Medical Genetics Branch research, visit http://www.genome.gov/10005723