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FSR has several programs to provide people affected by sarcoidosis
with the support they need to successfully cope with this disease.
Online Support - FSR Sarcoidosis Community
Our experience suggests that patients who use the Internet are
looking for information about their disease and also a mechanism for
support. FSR is proud to announce that we have partnered
with ClinicaHealth, a leading provider of online community services
for health organizations, to create a new service where sarcoidosis
patients around the world can share information and support one
another.
Since its launch in November 2006, the FSR Sarcoidosis Community has offered
more than 500 patients, their families and
caregivers a safe, trusted online environment to share stories,
conversations and as much or as little personal information as
desired. Members are actively participating in discussion groups and
building a network of online friends. They can also create
personal blogs (online diaries) to tell their stories on a daily
basis.
The online community is not meant to be a substitute for
professional medical information, but rather a place where those
affected by sarcoidosis can connect with others. Users will be
able to decide which information they wish to share, and with whom
they wish to share it.
If you or someone you love is living with this disease and want to
share and support others through their individual journeys and
experiences with sarcoidosis, we encourage you to register and
become members of our new Online Community.
Registration is
FREE!
Traditional Support Groups
In-person support groups can provide another great way for patients
and their family members to share experiences, emotions and
knowledge. Many people find that talking with others who have had
similar experiences can help them face the challenges of coping with
sarcoidosis with a positive attitude.
Through a collaboration with the patient support organization
Sarcoid Life we offer
the only updated list of local groups in the United States
available on-line.
The Foundation is happy to provide existing groups with free
information for their members. Please contact us at
312-341-0500 to request free material. Existing groups are
also encouraged to use the FSR Sarcoidosis Community to write a
group blog to keep members informed of upcoming meeting dates and
activities.
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