Rare / a film by Maren Grainger-Monsen & Nicole Newnham ; produced and directed by Maren Grainer-Monsen & Nicole Newnham.

Format:

Video

Contributor:

Grainger-Monsen, Maren, director, producer.

Newnham, Nicole, director, producer.

Helianthus Media.

Fanlight Productions.

Language:

English

Subjects (All):

Rare diseases.

Blood coagulation disorders.

Patient advocacy.

Genre:

Documentary films.

Nonfiction films.

Feature films.

Video recordings.

Physical Description:

1 streaming video file (56 min.) : digital, sound, color

polychrome

Place of Publication:

[Boston, Mass.] : [Distributed by] Fanlight Collection, 2014.

Language Note:

Closed captioned.

System Details:

System requirements: Firefox 4 and up; Safari 5.0 and up; Chrome version 21 and up; Internet Explorer 8 and up; Flash or HTML5 player.

Mode of access: World Wide Web.

video file

Summary:

When Donna Appell learned that her infant daughter Ashley had a rare genetic disease that would kill her in thirty years, she set out to track down every person in the world with Hermansky-Pudlak Syndrome (HPS). Realizing that no one was going to help cure "just one child," Donna forms an advocacy group and travels throughout the US and Puerto Rico to gather as many patients as possible who suffer from HPS, which includes albinism, blindness, a bleeding disorder and often a fatal pulmonary fibrosis.

Credits:

Editor, Andrew Gersh ; director of photography, Joel Shapiro ; music, B. Quincy Griffin.

Notes:

Title from title frames.

Originally produced by: Helianthus Media, c2012.

Description based on online resource; title from title frames (Docuseek2, viewed June 23, 2014).

Publisher Number:

fn-rare Docuseek2

Access Restriction:

Restricted for use by site license.