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Building Strength
Together®
Programs of Support
Today, people take greater
responsibility for their own health
care. Many people look for information
and support in helping them cope with
diseases, such as osteoporosis.
When people are diagnosed with
osteoporosis, they may face unexpected
changes in their lives. Some people may
even feel alone. Understanding more
about the disease becomes a priority.
Programs of support provide a way to
learn more about osteoporosis while
providing an opportunity to share
information, feelings and goals with
others in a similar situation.
To help people with osteoporosis, NOF
offers three exciting programs in its
Building Strength Together® network of
support and educational programs. These
three programs include:
NOF Osteoporosis Support Groups
Online Health Community
Linking Up
What It Means to Belong to an NOF
Support Group
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“I learned from my osteoporosis support
group that knowledge gives you the power
to fight this disease.” NOF Englewood
Community Hospital Support Group,
Englewood, FL
“We share our thoughts, ideas, joys and
woes, and we also have wonderful
speakers. Our leader always manages to
make it an upbeat session.” NOF Newport
Support Group, Newport, RI |
“The NOF support
group has provided me the
knowledge I need to support and
help my wife in coping with this
disease.” NOF Southside Osteo
Support Group, Greenwood, IN
“When a support group was formed
in my home town, I joined. A
whole world opened up for me,
and I learned how to help
myself. I learned about
exercise, medication, nutrition
and much more." NOF Citrus
County Osteoporosis Support
Group, Hernando, FL |
Joining a Support Group
NOF sponsors
osteoporosis support groups throughout
the country. The many benefits of
joining a support group include:
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Learning more about the disease and
treatment choices
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Receiving free brochures and educational
materials
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Feeling a sense of caring and
understanding
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Not feeling alone in dealing with the
disease
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Improving coping skills by learning how
others handle the disease
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Exchanging information about community
resources, including healthcare
providers who treat osteoporosis
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Improving mental and physical well-being
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Finding hope and encouragement
If you are looking to join a support
group, click here for a listing of the
locations that have NOF osteoporosis
support groups. For privacy reasons, NOF
does not list phone numbers, addresses
or email information for support group
leaders on our Web site.
How to Join a Support Group — To join a
support group, contact the National
Osteoporosis Foundation for information
on the nearest support group to you.
Call NOF’s Education Department at (202)
223-2226 or toll free at (800) 231-4222.
Starting a Support Group
Both health professionals and people
with osteoporosis make excellent support
group leaders. If there is not a support
group in your area, consider starting
one. NOF depends on volunteers to serve
as support group leaders.
In addition to meeting and sharing with
each other, support group members
receive educational information. Some
support groups have guest speakers, and
some incorporate exercise. The focus
depends on the needs and interests of
the support group and community. Support
groups may meet monthly, quarterly or
less often.
NOF provides all support groups leaders
with excellent resources including:
- Support group manual — The support
group manual is a comprehensive guide to
help you start, promote and conduct
successful support group meetings.
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Free educational materials — NOF
provides all of your educational
materials including brochures,
information sheets, quarterly
newsletter, PowerPoint presentation,
posters and more.
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Networking opportunities — NOF will
connect you with other support group
leaders with whom to network and
exchange ideas.
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Topics and program ideas — NOF
maintains a list of topics and program
ideas.
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Referrals — NOF will direct all
support group inquiries to your group to
assist you in growing your membership.
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And, more! Including May Osteoporosis
Awareness and Prevention Month
materials.
Teamwork — NOF suggests that two people
work together as leaders of a support
group whenever possible. With a team
approach, two people share the
responsibilities for planning meetings,
inviting speakers, and organizing and
promoting the group. NOF has found that
the strongest team consists of a
healthcare provider and patient, but
other dynamic combinations, as well as
individual volunteers, can be just as
effective.
Health Centers, Clinics and Medical
Groups — An osteoporosis support group
benefits your patients and extends the
reach of your medical practice in the
community..
For More Information — Call NOF’s
Support Group Coordinator at (202)
223-2226 or toll free at (800) 231-4222.
Online Health Community
NOF’s online health community uses the
Internet to help people connect with
others who have osteoporosis. Many
people do not live near an existing
osteoporosis support group and do not
know others with similar concerns about
their bone health. The online health
community provides another way to bring
people together to support each other
and learn more about osteoporosis
The online health community includes
blogs, individual Web pages,
discussions, message boards and more.
One of the ways members can expand their
social network within the community is
through a personal profile. The NOF
online health community links members by
gender, the topics in which they are
interested and where they live. This
helps people more easily find and
connect with others in similar
situations. Discussions are categorized
by topic, making it easy for members to
find topics that interest them.
Because health issues are private,
security measures have been put in place
to ensure that members have control over
their personal information, such as
hiding their full name and email address
from others. To prevent inappropriate
content, discussions are moderated and
there is a community help desk
Participation is open to people
concerned about their bone health,
patients with osteoporosis, caregivers,
family members and health professionals.
- Sign up – it’s free
- Join the conversation
- Read popular items
- Write a blog
- Meet new people
- Discuss topics of interest and share
information
Here is the URL to join NOF’s online
health community:
http://nof.inspire.com
Linking Up
Over the years, NOF has heard from women
and men with osteoporosis who are
interested in participating in a support
program that enables them to communicate
with others by email, letter or phone.
In response, NOF developed the Linking
Up program.
Linking Up offers three choices for
participation. Because women have
age-related concerns about menopause and
medications, Linking Up for women is
divided into two groups:
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Linking Up I for Women between the
ages of 20-50
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Linking Up II for Women ages 51+
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Linking Up for Men of all ages
Through the Linking Up program, people
communicate with each other about their
thoughts and experiences concerning the
diagnosis, prevention and treatment of
osteoporosis.
There are several ways to connect with
one another, so members decide how this
program works best for them. Contact
information (for example, address, email
and phone) is for use by NOF and Linking
Up members only. It is not shared with
any outside sources.
To participate in a Linking Up group,
download the appropriate application
form below. Return your completed
application by postal mail or fax to
(202) 223-2237. Applications are not
accepted by email as a signature is
required.
Linking Up
For Women
Linking Up
for Men
Update My Contact Information
National Osteoporosis Foundation (NOF)
Support Group Coordinator
Building Strength Together®
1150 17th Street NW, Suite 850
Washington, DC 20036
Tel: 202-223-2226 or 800-231-4222
Fax: 202-223-2237 |
Clinical research study in patients with acute back pain from vertebral compression fractures associated with osteoporosis
A major pharmaceutical company is sponsoring a clinical research trial for patients with acute back pain caused by vertebral compression fractures associated with osteoporosis.
The goal of this study is to gain additional information on the safety and effectiveness of a newly approved oral opioid (analgesic medication) in patients 50-85 years of age, with acute back pain caused by vertebral compression fractures (VCFs) associated with osteoporosis. Eligible patients, will be randomized to treatment with one of two Food and Drug Administration (FDA)-approved oral opioids or placebo for up to 10 days. Those enrolled will have physical examinations and lab tests at no cost to them and will report their pain levels and other quality of life measures twice daily by phone.
There are approximately 80 study sites across the United States. For more information, please contact VCFstudy@Omnicarecr.com.
Interested in
participating in an Idiopathic
Osteoporosis in Premenopausal Women
Research Study?
The
study is is sponsored by The
National Institutes of Health,
Institute of Arthritis,
Musculoskeletal and Skin Diseases (NIAMS).
NIAMS is looking for women with the
diagnosis of osteoporosis and women
over the age of 18 who are
experiencing non-traumatic
fractures. A stipend is being
provided and assistance with travel
is available if necessary.
Click here to learn more about this
study.
Interested in learning more about
the quality of your bones?
Investigators at Columbia University
Medical Center are looking for
postmenopausal women to participate
in a study at using a new
non-invasive technology called high
resolution peripheral quantitative
tomography (HRpQCT). Click here to
learn more about this
study.
In
addition to osteoporosis support
groups, NOF offers other ways to
participate in it’s programs and
services. Please click on the link
below to go to the page of your
interest.
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FINDING A DOCTOR: |
Learn
about specialists who
treat osteoporosis or find a
provider in our Professional Partners
Network® Directory |
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MEMBERSHIP: |
Join the NOF Family and receive
the
Osteoporosis Report, NOF’s
quarterly newsletter, as well as Boning
Up, NOF’s 74-page handbook on
osteoporosis. |
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REQUEST INFORMATION: |
Request information on
osteoporosis prevention and treatment. |
*from:
Self-Help: Concepts and
Applications, edited by A. Katz,
et. al, Charles Press, 1992
JOIN
THE NOF FAMILY NOW
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