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2013-farncombe-event

Patient & Carer Weekend 2013 Invitation

You are invited to join the UKPIPS Community, Volunteers and Trustees for a weekend getting to know you, workshops and hopefully fun at the Farncombe Estate Conference Centre on the edge of the Cotswolds in Worcestershire.

The weekend will start with Morning Coffee on Saturday, followed by workshops which will include benefits advice, employment issues, our leaflets and the Information Standard, as well as an opportunity to hear about UKPIPS’ first year and the Annual Report. We also hope you will let us know what UKPIPS can do for you and help us to

2013-flu-vaccines

Flu Vaccines 2013

Patients with a Primary Antibody should have the normal flu vaccine. Whilst this may be less effective in antibody deficiency, even partial protection is worth having.
Those patients with respiratory disease associated with antibody deficiency may be particularly badly affected by influenza and should most certainly have the flu vaccine.
Patients who have a severe egg allergy should remind their GP of this, as they may need an egg-free brand of vaccine.

2013-shingles-vaccine

Shingles Vaccine 2013

Patients with a Primary Antibody Deficiency who are on replacement antibody therapy, should not normally receive this vaccination. If they develop shingles, they should see their GP immediately for treatment with acyclovir or other anti-shingles medication.

Shingles affects one side of the body only and appears as painful spots or pustules. Download this leaflet for more information.

201307-letter-scotland

Letter to Community Members in Scotland

To all our community members in Scotland.

We have been working towards organising a series of meetings for you, to be held as near as possible to your treatment centres in Aberdeen, Dundee, Glasgow and Edinburgh. We now have the funding to be able to do this and would like your views on whether you would like us to organise these for you?

People living in Scotland have very specific needs, given both the Health and Social Services legislation relating to them and the distances many of them have to travel to get to their specialist immunology centres.

scid-screening-campaign

SCID Screening Campaign

I am writing to support the initiative to introduce screening of babies for Severe Combined Immunodeficiency (SCID)

This test can be done using the blood that is already taken from babies and it would therefore not cause them any extra suffering or discomfort. The test is very cheap and I understand that the cost of doing it will be far less than the cost of caring for SCID children who are not diagnosed and therefore become very unwell and need a lot of expensive hospital treatment.

Click on the download button to get a copy of the full letter.

ukpips-christmas-cards-2012

UKPIPS Christmas Cards 2012

Earlier in the summer, we invited members of the Forum and visitors to our
website to submit photos, drawings or pictures for our Christmas Card fundraising
programme. We had a very encouraging response for which we thank everyone
who took part. The idea was to encourage anyone with a family member or close
friend with a Primary Antibody or Primary Immune Deficiency to be able to regard
the Christmas Card fundraising campaign as a ‘community’ effort – rather than
just something that was the idea of the Trustees. We hope you like all of them
and it’s clear we’ve got some very talented children out there with very
impressive artistic skills!