Patient support
Support and understanding can be extremely important to anyone
who has been diagnosed with an illness. Even more so if this
illness is Hughes Syndrome which is as yet little known by the
people around you, be they family, friends or your doctor which
can make it a lonely experience.
Here at the Hughes Syndrome Foundation, we aim to be somewhere
patients can come to find support, information and people who
know what it means to have this disease. We have helped establish
and promote various communication channels and opportunities
to find the support and information that is needed. These include
our membership scheme through which
we have established local support and fundraising groups, and
recommended online discussion groups.
Local support and fundraising
groups
Through our membership
scheme we are continuing to set up local support groups
throughout the UK and around the world, so you can get in touch
with each other more easily. Our members have found these groups
to be very beneficial both in terms of offering each other support
and raising awareness in their local areas so that more doctors,
clinics and hospitals know about Hughes Syndrome. At present,
we only have a few groups established so if anyone is interested
in either joining or setting up a support/ fundraising group
in their area, please contact Kate
Hindle. Click on the map below to see if we have a group
set up near you.
Online groups
Online discussion
groups have been set up for people to get support and information,
as well as friendly chat. The Hughes Syndrome Foundation has
no formal links with these groups, but recommends them as friendly
and knowledgeable communities. The Hughes Syndrome Support Group
site is run by, and for, our members but everyone is welcome.
Click
here to access the Hughes Syndrome Support Group forum
Click
here to access APLSUK
Click
here to access Delphi Forum
Click
here to access Hughes Syndrome Pregnancy Support
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