what-when-how
In Depth Tutorials and Information
CHAPTER
3
The Osteogenesis Imperfecta Community
and Scientific Research: A Valuable
Partnership
Tracy Smith Hart and Mary Beth Huber
Osteogenesis Imperfecta Foundation, Gaithersburg, MD, USA
Unlocking the mysteries of osteogenesis imperfecta
(OI) and other rare disorders is a challenging endeavor.
In today's world, success requires partnerships and
collaboration between government-funded research,
industry, private research, people who are affected by
the disorder, their families and the medical specialists
who provide treatment. In an increasingly sophisti-
cated world, the rare disorder advocacy organization,
like the Osteogenesis Imperfecta Foundation, must
take a pivotal role to make these partnerships a real-
ity. In many ways the OI Foundation functions as a
crucial communications hub. It is in a unique position
to provide researchers with insight into the patients'
perspective - their concerns and priorities. It trans-
lates information from medical journals and scientific
meetings into accessible language for families. It dis-
seminates information to families to help them make
informed decisions about treatment and to community
health care providers who have a single OI patient. The
OI Foundation is in a unique position to be an advocate
for the OI community and a force for forming effective
partnerships.
At one time, organizations like the OI Foundation
were described as “patient and family self-help
groups.” Today they are often described as “volun-
tary health agencies” or “patient advocacy organiza-
tions.” A more accurate title might be Information AND
Advocacy Organization. Regardless of the name, the OI
Foundation and other similar organizations share cer-
tain traits. They are:
●
Governed by volunteers who often work with
professional staff to achieve the organization's goals.
●
Providers of accurate information about the
condition to families and health care practitioners.
●
Concerned with increasing the pace of research and
the dissemination of discoveries through effective
collaboration.
O
I FOUNDATION HISTORY
The OI Foundation is the only organization in the
United States solely dedicated to expanding knowledge
about OI, finding improved treatments and laying the
groundwork for an eventual cure. It was founded in
1970 by a group of parents looking for mutual support
and information. From the onset they were eager to
increase research into the causes of and treatments for
OI. The founders were motivated to reduce the isolation
experienced by families coping with OI as well as the
isolation felt by researchers and primary care doctors
working to understand a rare disorder. Over the years,
the OI Foundation became the first stop for people
looking for information on OI because of a new diag-
nosis, because of a new symptom or because of a new
challenge they are facing as a person living with OI. It
also serves as a primary source of information to many
others including health care providers. The mission of
the OI Foundation is broad - to improve the quality
of life for people affected by OI through information,
mutual support and research. From the beginning more
than 40 years ago, the OI Foundation has embraced this
●
Focused on a specific chronic condition, disease or
aspect of health care.
