First Social Network for Osteoporosis Launches at Global Patient Conference

Valencia, Spain (ots/PRNewswire) - On Friday 18 March
the International Osteoporosis Foundation (IOF) announced the launch
of OsteoLink, a new social network for people affected by
osteoporosis. Through OsteoLink, the IOF will create the first global
online and in-person network dedicated to improving communications
about osteoporosis, a condition affecting one in three
post-menopausal women and one in-five men in Europe.[1]

OsteoLink is both Online and In-Person As Numbers of 'Silver
Surfers' Increase in Europe The key differentiating feature of
OsteoLink is that it supports the osteoporosis community - including
friends, family and health professionals - both online and with
in-person group meetings. As women over 55 are being hailed as the
fastest growing users of social networking, and people between 50-65
are the fastest growing age group using the internet in Europe,[2]
local OsteoLink communities are designed to make it easy for people
with osteoporosis to connect online and through community-based
activity. In some countries, where online activity is lower,
in-person activity will not only address gaps in communication but
also provide tools and training, such as internet skills workshops.

'The International Osteoporosis Foundation (IOF) is proud to be
at the forefront of an innovative healthcare social network that
directly answers urgent unmet needs in the way people with
osteoporosis and healthcare professionals communicate,' said Patrice
McKenney, IOF Chief Executive Officer, 'By helping to encourage
better communication and stronger networks of support, we hope
OsteoLink will lead to better personal management of osteoporosis and
to greater understanding and advocacy for this serious condition that
puts so many of us at risk.'

An Innovative Response to Unmet Needs in Communications and
Understanding About Osteoporosis Concerns about the emotional and
physical impact of this brittle bone condition are consistently
underestimated by health professionals,[3] according to the results
of a survey commissioned by the IOF in 12 countries in Europe and
Australia. Published in the December, 2010 issue of Archives of
Osteoporosis in an article entitled 'The gaps between patient and
physician understanding of the emotional and physical impact of
osteoporosis,' the survey findings suggest that:

- While people with osteoporosis fear fractures, they also report
missing doses of their medication, suggesting that the link between
adherence to treatment and increased fracture risk is not fully
understood.[3]

- Physicians underestimate how many patients worry about breaking
a bone (51% vs. 79%) as well as patient concerns about decline in
activity levels (40% vs. 70%), becoming dependent on others (30%
vs.60%), and not being able to work for longer (30% vs. 57%).[3]

- People with osteoporosis believe that the most credible
information about osteoporosis comes from specialists (94%), they
want easy to understand materials (75%) and one-in-two would welcome
discussing osteoporosis with others like themselves.3

Pilot Programme and 2011 Country Launches

The OsteoLink pilot phase began at the end of 2010, from which
key findings from the first programmes in select European countries
are currently being assessed. Online networks and in-person meetings
are now running in Austria and Sweden, available at
www.osteolink.org. This year, the IOF will continue to support the
development of OsteoLink in Germany and Switzerland, and expand to
five new countries: Spain, Australia, Greece, Portugal and France.

'It's really exciting to think about a place where people with
osteoporosis, their friends and family can come together to share
information and support each other,' explains Therese Holm, taskforce
member and Coordinator of OsteoLink Sweden.

A Global Network, with Country-Based Communities

OsteoLink operates at a global level, with the IOF working in
partnership with the Division of Bone Diseases at the Faculty of
Medicine, University of Geneva to provide template content and tools
that respond to current unmet needs of people with osteoporosis.
These tools, along with guidance and support, are then passed along
to OsteoLink country taskforces, for implementation, localisation,
and the development of new content to best respond to
country-specific medical needs, local language and culture. OsteoLink
country taskforces are made up of IOF member National Societies,
which include osteoporosis patient and professional organisations.

The OsteoLink Commitment

The IOF and its partners are committed to making OsteoLink a safe
and trusted source of credible and current information. At the global
level, the programme is advised by a Scientific Committee of leading
osteoporosis experts from across Europe. OsteoLink protects member
privacy, asking only for an e-mail address and in some cases a
country name in order to register. Country taskforces ensure
consistent forum moderation and information about OsteoLink members
will never be used for commercial purposes or shared with any funding
sponsors.

An Innovative Partnership

OsteoLink is a partnership between the IOF, the Division of Bone
Diseases at the Faculty of Medicine, University of Geneva and the
IOF's network of approximately 200 National Society members from 92
countries. The OsteoLink implementation team includes Syzygy, a firm
specialising in online engagement strategies and Hill & Knowlton, a
communications consultancy specialising in the activation of online
and in-person healthcare communities.

OsteoLink is funded by grants from the EU and the Swiss
Confederation through the Ambient Assisted Living (AAL) Joint
Programme on research, Amgen (Europe) GmbH in collaboration with
GlaxoSmithKline (GSK), Medtronic Foundation and other partners.

About Osteoporosis

Osteoporosis, in which the bones become porous and break easily,
is one of the world's most common and debilitating diseases. The
result is pain, loss of movement, inability to perform daily chores,
and in some cases, death. Worldwide, one in three women over 50 will
experience osteoporotic fractures, as will one in five men.
[4],[5],[6] Osteoporosis can be prevented to a certain extent, if it
can be diagnosed early and effective treatments are available.
Nevertheless, osteoporosis often remains under-diagnosed and
under-treated, leaving people at unnecessary risk of fractures.

About the International Osteoporosis Foundation

The International Osteoporosis Foundation (IOF) is a
not-for-profit, nongovernmental organization dedicated to the
worldwide fight against osteoporosis, the disease known as "the
silent epidemic". IOF's members - scientific researchers, patient
organisations, medical and research societies and industry
representatives from around the world - share a common vision of a
world without osteoporotic fractures. IOF, with headquarters in
Switzerland, currently includes 194 member societies in 92 countries,
regions and territories. The Foundation works with its members to
advance the understanding of osteoporosis and to promote prevention,
diagnosis and treatment of the disease worldwide. Among its numerous
programmes and activities, IOF mobilises the global osteoporosis
movement on World Osteoporosis Day every year and organises the IOF
World Congress on Osteoporosis and the IOF World Wide Conference of
Osteoporosis Patient Societies every two years.

References ---------------------------------

[1] International Osteoporosis Foundation. EU policy report of
2011. Osteoporosis in the European Community: A Call to Action
(2011). Accessed at http://www.iofbonehealth.org/download/osteofound/
filemanager/publications/pdf /eu-report-2001.pdf on 11 March 2011

[2] European Interactive Advertising Association (EIAA), Silver
Surfer's Report. (2007)
http://www.eiaa.net/news/eiaa-articles-details.asp?id=138&lang=1,
Accessed on 14 March 2011

[3] Rizzoli et al. The gaps between patient and physician
understanding of the emotional and physical impact of osteoporosis.
Archives of Osteoporosis (2010) 5: 145-153.

[4] Melton U, Chrischilles EA, Cooper C et al. How many women
have osteoporosis? Journal of Bone Mineral Research (1992) 7:1005-10

[5] Kanis JA et al. Long-term risk of osteoporotic fracture in
Malmo. Osteoporosis International (2000); 11:669-674

[6] Melton LJ, et al. Bone density and fracture risk in men.
Journal of Bone Mineral Research (1998) 13:No 12:1915

For more information about the IOF visit
http://www.iofbonehealth.org

ots Originaltext: The International Osteoporosis Foundation (IOF)
Im Internet recherchierbar: http://www.presseportal.de

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