what-when-how
In Depth Tutorials and Information
with OI joined forces to address the questions raised by
the meeting. With the help of OI Foundation staff, focus
groups were held at the 2010 National Conference, lead-
ing to a national survey in October 2011. Data from this
survey will be used to identify and prioritize the health
care questions of adults who have OI, and provide pre-
liminary information about which medical conditions
faced by adults might be related to having OI. The goal
is to begin assembling guidelines to help adults and
their primary care physicians be proactive about man-
aging their health and to interest clinical researchers in
different medical specialties to do in-depth studies of
the key questions. This study is a good example of the
OI Foundation using its resources to identify and take
action on a specific issue.
why having a strong advocacy organization as a part-
ner in research is so important both for the community
of families and the community of researchers. The OI
Foundation connects the OI community with the medi-
cal research community, serves as a barometer regard-
ing joys and concerns of people who have OI and plays
an important role in the dissemination of up-to-date
information on clinical and laboratory findings.
A critical component to the success of the OI
Foundation is the level of involvement from volunteer
leaders in the research and medical community. The OI
Foundation depends on the expert consultation from
geneticists, orthopedic surgeons, physical and occupa-
tional therapists, rehabilitation specialists and endocri-
nologists, to name a few, who are willing and able to
provide information to constituents in a timely man-
ner. The OI Foundation is fortunate to have the very
best OI researchers in the world as part of their Medical
Advisory Council.
Equally critical is the commitment of the OI
Foundation's members: the children, parents, grand-
parents, spouses, friends, young adults and adults who
raise the money, share their stories and see answers to
important questions. The OI Foundation is proud that
many of its current adult volunteers, support group
leaders and board of director members are the children
of a previous generation of parents.
IN CONCLUSION
For rare disease patient advocacy organizations,
like the OI Foundation, it is important to choose issues
wisely and to use limited resources in the most effective
manner. While the OI Foundation cannot do all of the
research that needs to be done, or even raise all of the
money to fund that research, it is in a position to collab-
orate with government, industry and the research com-
munity to get the job done. It brings to this important
task skills in advocacy, communication, access to the OI
community and experience with some model programs.
The world of the patient advocacy organization has
changed over the years. The voice of the patient advo-
cate has become stronger and more educated. Not
because patients and their supporters have necessarily
become smarter in the 40 years since the OI Foundation
was founded but from hard earned experience and
changes in information technology. The amount of
information available has grown exponentially, which
in some ways complicates the medical decision-making
process. Information on every possible topic is as near
as the closest touch screen; it is plentiful and some-
times overwhelming. It is now necessary to digest and
evaluate multiple pieces of information from multiple
sources. Becoming a well-educated self-advocate who
is able to decipher the medically verified information
from other information takes time and patience. That is
The reward for work well done is the opportunity to do
more.
Jonas Salk, MD
In summary, the OI Foundation is an active partner
with the OI medical and research community; it makes
resources available to families and to professionals
looking for medically verified relevant information; it
is a leader in the OI community in the areas of advo-
cacy, collaboration, education and communication, and
is delighted to be an active partner with so many of
the authors of this topic. The OI Foundation's mission,
improving the lives of people with OI through research,
awareness, education and mutual support, can only be
fulfilled if all stakeholders are involved in the process of
finding new and improved treatments for people with
OI. You can learn more about the OI Foundation by
visiting their website at
www.oif.org
.
