Read
the following information and if you have HAE yourself, THINK ABOUT
BECOMING A TRIAL VOLUNTEER. IT COULD HELP YOU WHILE HELPING OTHERS!
There are currently no
on-going HAE treatment trials.
Early next year volunteers
will be called for to partake in trials for HOME THERAPY of ICATIBANT.
Watch this space for details.
What can the P.I.A. do for me?
The Primary Immunodeficiency Association (P.I.A.) aims to improve
the quality of life of all people with primary immunodeficiencies.
For the H.A.E. sufferer we can provide a wide variety of services
and resources. These would include :
Publications such as the 'booklet'
Understanding Hereditary Angioedema and Acquired C1-Inhibitor Deficiency'.
P.I.A. information packs for the lay
person and the professional.
Regional Days at different locations
around the U.K. where members can meet up with others in similar
situations.
Assistance with benefits. To download
our Guide to Claiming DLA for persons with HAE , click....HERE
After Hours Helpline : 0845
6039158 is a telephone helpline available outside
office hours
Condition Specific Contact : speak
in confidence to another H.A.E. sufferer for advice and sharing
of experiences
Online forums
For more information on any of the above topics please contact the
P.I.A. through the home
page.
What is the Consensus Document?
The Consensus Document
represents the outcome of discussion and research on the best practice
for the diagnosis, treatment and management of C1-inhibitor deficiency.
It’s adoption will mean that there is a standard set out for
patients that will ensure uniformity of treatment (hopefully) throughout
the world.
Check out Andy Long’s
web site http://www.thirdbass.co.uk
to see publicity for HAE in ‘Wales on Sunday’. Anyone
who would be prepared to tell their HAE story to the media to help
raise the awareness of HAE should contact the PIA and ask to speak
to John.
We are looking for HAE
patients who might be able to help inthe next
Jeans for Genes campaign. Please contact Kate
at the PIA office to know more and to receive a Jeans for Genes
information pack.
