DVDS
ON
HEALTHCARE
,
MENTAL HEALTH
,
DISABILITIES
,
AGING
,
ETHICS
,
AND
DIVERSITY
THE
FANLIGHT COLLECTION
Soon after her daughter Ashley’s birth,
Donna Appell learned that she suffered from a
genetic disorder that would kill her in thirty years—
a disorder less than thirty people in the US were
known to have. Realizing that no one was going to
help cure “just one child,” Donna formed an advocacy
group for patients suffering from Hermansky-Pudlak
Syndrome (HPS), which includes albinism, blindness,
a bleeding disorder and often a fatal pulmonary
fibrosis. By the time Ashley turns twenty, Donna has
achieved something incredible: the group she started
is now in the hundreds and the NIH has agreed to
start a clinical trial.
Filmed over three years, RARE follows Donna as she
travels the country in a race to fill the drug trial she
hopes could prolong Ashley’s life.
RARE takes viewers into the world of what it is like to
live with a rare genetic disease, and opens a window
into the world of clinical trials. We also see how
patient advocates are joining together to increase
their influence—following Donna’s group as they
lobby on Capitol Hill along with members of
other rare disease groups.
While the diseases may be rare, there are over
30 million Americans with some sort of rare
disease. And as Donna finds out that Ashley
herself must be excluded from the trial, RARE
puts into relief the importance of hope, love and
perseverance in the face of impossible odds.
Rare
A film by Maren Grainger-Monsen, MD & Nicole Newnham
“While the number of people who
suffer any specific disease is small...
they all share the isolation and lack of
medical support endemic to
suffering a disease few people have
and no one knows anything about.”
—San Francisco Chronicle
56 minutes
|
color
|
2012
|
Sale/DVD (Chaptered): $248
2014 Conference,
Association of
Clinical Research
Professionals
2012 Science
Education Conference,
National Institutes
of Health
