The Sophie Cameron Trust
www.thesophiecamerontrust.org.uk
The primary object of the Trust is to raise and accumulate funds in order to promote
research into effective treatment for encephalitis lethargica and studies on the
incidence of this condition, to encourage the development of new and advanced techniques
(including brain stem cell transplantation), to promote the welfare of any person
who is, or has been suffering from this condition, and to help meet the cost of
medical and associated fees incurred wherever in the world treatment may become
available in years to come. The committee has set itself a target of raising a quarter
of a million pounds within three years.
Encephalitis Ireland
www.encephalitisireland.ie
Irish Encephalitis Survivors
Welcome Support Group and Website
Irish people suffering from
the life threatening disease encephalitis will today welcome the launch of The Encephalitis
Society of Ireland. This new support group has been set-up by two Irish survivors
to help improve the quality of life of those directly and indirectly affected by
the illness.
Stories on the net about Encephalitis
www.1halloween.net/encephalitis
Encephalitis survivors or in some cases, caregivers have posted stories to this
web site. People from all walks of life and from all parts of the world. Often these
stories can give information that is not available elsewhere. They have told you
what it was like before this illness, what caused the Encephalitis, and what it
is like for them now. It has taken a tremendous amount of courage for the writers
to relive these stories by writing them so that you will have information that was
not previously available to the public.
Encephalitis Global
www.encephalitisglobal.org
Encephalitis Global... is a free, no charge website, sharing information and support
between encephalitis survivors, caregivers and loved ones and, with folks who wish
to learn more.
Anna's Room
www.annas-room.org
Anna, who is 27 years old, has been a patient in the Wessex Neurological Centre
at Southampton General Hospital since August 2005 suffering from Encephalitis. This
is her third episode since she was 18, cause unknown.
The hard work of everyone in Intensive Care (ITU), the High Dependency Unit (HDU),
Stanley Graveson Ward and Victoria House, the acute rehabilitation unit has been
unbelievable. The expertise and care she has been given together with the help and
support we have been shown has never wavered for a moment. It is ongoing and we
do not know the outcome, but we need to say "thank you" in some way.
Survivors Plus
http://eglobal.ning.com/
Encephalitis survivors and caregivers, families and friends...
Xpression
http://encephalitis.30.forumer.com/index.php?act=idx
This website welcomes anyone, but particularly young people, with experience of
encephalitis who wants to talk to like minded people, using a forum format.
Encephalitis Families
www.groups.yahoo.com/group/Nceph2Group/
N-C.E.P.H.- National Childhood Encephalitis Parent's Help Group which is an open
Forum/ Email exchange
Location: United States
Established October 2000
We talk about issues related to children who have survived encephalitis. This is
a parent's email exchange network.
Epp Expert Patients Programme
Commmunity Interest Company
www.expertpatients.co.uk
Learn to manage your condition. Whether you are affected, a parent, a carer, the
expert patient programme has a free course in your local area or online.
Last modified:28 November 2008