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News
Archive
Sponsor
someone in the Keswick to Barrow 40 mile cross country run
Oliver
Davies is participating in the Keswick to Barrow 40 miles cross country
run on Saturday May 9th, on behalf of the Psoriasis Association. Please
sponsor him via his Just Giving page www.justgiving.com/oliverdavies
- good luck!
It is not too late to sponsor a runner in the London Marathon!
Stuart
Parry ran the London Marathon on Sunday 26th April 2009 on behalf of
the Psoriasis Association. Please sponsor Stuart via his Just Giving
site
www.justgiving.com/stuartparry
- congratulations
to Stuart on running his first ever marathon!
Psoriasis Association Annual Conference and AGM
Presentations include
Guy Kennaway, author of "Sunbathing Naked" and Dr Christine
Clark, a Pharmacist with a Special Interest in Dermatology. A chance
for people with psoriasis to get together, learn from eachother and
let the Psoriasis Association know what really matters.
A small charge of £8 is required to cover lunch and refreshments.
Places MUST be booked by Friday 1st May, 12 noon.
Please call the office on 01604 251620 to book your place.
Upcoming meetings
Glasgow - Venlaw Building,
349 Bath Street, Saturday 28th February 2009, 10am-3pm. Please contact
the office
if you wish to book a place.
Big Band Night - Charity Concert
Come and join us on
Saturday 7th February 2009 at 7.30pm for an evening of fabulous music
performed by Northamptonshire's award winning youth jazz and big band
orchestra. This will be a wonderful evening of entertainment showcasing
the exceptional talent of local young people as well as an opportunity
to support the work of the Psoriasis Association. The concert is being
held at the Lighthouse
Theatre in Kettering and tickets cost £6 for adults and £4
for concessions. Tickets are available from the Lighthouse
Theatre box office only either via their website www.lighthousetheatre.co.uk,
or by ringing the box office on 01536 414141
(open 10am - 2pm and 4pm - 7pm Monday to Friday
and 10am - 2pm on Saturdays).
NLH 2008 Annual Evidence Update on Psoriasis
To
coincide with Awareness Week, the National Library for Health are holding
their second annual update on psoriasis from November 3rd. Please visit
their website for further details.
NLH Annual Evidence Update
on Psoriasis
Psoriasis; Patients and Health Professionals in Partnership
When - Thursday
6th November 2008, 10am - 4pm
Where - The Fielder Centre, University
of Hertfordshire
Cost - Health
Professionals £35, Patients and Carers £10 - includes lunch
and refreshments
This is a key event in Psoriasis Awareness Week 2008 to recognise the
importance of the relationship between the patient with psoriasis and
health professionals.
The day will appeal to patients and their carers and health professionals
who are committed to patient centred care. The emphasis of the day will
include patients discussing their personal experience of working with
health professionals to manage psoriasis.
For further information, or for a booking form, please contact the office
Doctors!
Research Grants
The closing date for research
grant applications has now past - we will be in touch in due course.
Essential acute dermatology for General Physicians and GP's - the Royal
Society of Medicine, Tuesday 23rd September
The aim of this meeting is to discuss
the diagnosis and management of acute dermatological problems at the
primary-secondary care interface. The emphasis will be on conditions
that may initially present from general practice to acute medical receiving
units, and the main focus will be the requirement for referral, diagnosis
and differential diagnosis, and the early management and investigation.
For further information and the programme for the day, please click
here,
or to book, please visit
http://www.rsm.ac.uk/academ/cuderm.php
Route 66
Congratulations to Dr Kate Condon who
has completed her mammouth run of Route 66 in America on behalf of the
Psoriasis Association. To read Kate's blog, please visit:-
www.psoriasis-association.org.uk/route66.html
It is not too late to sponsor Kate! If you would like to sponsor Kate,
please contact the office
Walk for Skin 2008
We
are delighted to announce the return of "the Walk for skin"
in 2008. The walks will take place on
Sundays throughout April, May and June
this year and in various locations around the UK:-
• London Regent's Park - Sunday 27th April
• Bristol
Ashton Court Estate - Sunday 11th
May
• Glasgow
Pollok Country Park - Sunday 11th
May
• Birmingham
Sutton Park - Sunday 18th May
• Manchester
Heaton Park - Sunday 18th May
• Southampton
Itchen Valley Country Park - Sunday
8th June
• Newcastle
Tyne Riverside Country Park -
Sunday 15th June
•
Leeds Temple Newsam - Sunday 22nd June
•
Cardiff Bute Park - Sunday 29th
June
For
information regarding The Walk for Skin or the venues, please visit
the website www.walkforskin.org
or contact the British Skin Foundation office on 020 7391 6341 or email
bsf@bad.org.uk. When you register,
don't forget to state that you wish to donate 50% of your sponsorship
money to The Psoriasis Association!
Patients Talking Website
Patients Talking is a website that allows people to confidentially write
a diary about any health condition, and read diaries written by others
with similar conditions. It aims to prevent people feeling alone and
allow them to compare notes. www.patientstalking.com
The
Great British Duck Race!
We would like to thank everybody who sponsored a duck in the Great British
Duck Race - £80 was raised for the Psoriasis Association.
Psoriasis
Awareness Week 5th-12th November 2007
We are delighted to announce the launch of PsoKids for this years Psoriasis
Awareness Week. PsoKids is an interactive, fun-packed CD-ROM designed
mainly for children. To receive a free copy of the CD-ROM or to receive
a Psoriasis Awareness Week pack to take to your GP surgery, Dermatology
Department, school, work, gym, library, please contact us
Medicine
and Me: Choices in Psoriasis
The Royal Society of Medicine and the Psoriasis Association are holding
a Medicine and Me meeting for people with psoriasis and their families
or carers on Tuesday 13th November 2007 with registration and coffee
from 12 noon and the first talk at 1pm. These meetings aim to provide
a forum for discussion regarding patient's concerns and an opportunity
to hear from experts in treatment and research. The topics include key
advances in psoriasis research, inherited psoriasis, what research is
telling us, lifelong experience of psoriasis, lifelong care, new treatments:
the patient's perspective and new treatments: what should be given when?
For further information about the even, please click here or contact
Bina Arpino at the Royal Society of Medicine on 0207 290 3946 or email
bina.arpino@rsm.ac.uk If you wish to register online, please visit www.rsm.ac.uk/diary
The
Psoriasis Association Annual Review 2007 can now be downloaded from
the Publications Page
Walk
for Skin 2007
We are delighted to announce the return of "the Walk for skin"
in 2007. The walks will take place on Sunday May 13th and Sunday May
20th. The venues for 13th May are Beamish, the North of England Open
Air Museum, near Newcastle, Wollaton Deer Park, Nottingham, Bramham
Park, near Leeds, University of East Anglia, Norwich and Belfast Castle,
Belfast. The venues for 20th May are Beaulieu Motor Museum, near Southampton,
Cosmeston Lakes County Park, near Cardiff, Holyrood Park, Edinburgh,
Cheddar Gorge, Somerset, Tatton Park, near Manchester, Windsor Great
Park, Thames Valley, Regents Park, London and Lickey Hills Country Park,
Birmingham.
You can register online or by phone from February 2007. For information
regarding The Walk for Skin or the venues, please visit the website
www.walkforskin.org or contact the British Skin Foundation office on
020 7391 6352 or email bsf@bad.org.uk. Please note that people will
be able to sign up for the walks online from the 1st Feb - when you
register online, don't forget to state that you wish to donate 50% of
your sponsorship money to The Psoriasis Association!
Psoriasis
Association Annual Conference and AGM - Saturday 12th May 2007
The Association’s Annual Conference & AGM will take place
on Saturday 12 May 2007 at The Park Inn, Northampton from 10 a.m. –
3.15 p.m. Guest speaker in the morning, following the AGM, is Dr Barry
Monk, Consultant Dermatologist at Bedford Hospital. His talk is entitled
Enough is Enough. There will be a discussion session in the afternoon
on the theme of the patient journey. This is an opportunity to find
out about the work of the Association, meet trustees and staff and chat
to other members. Do join us. For more information and to book contact
the office by phone 08456 760 076 or e-mail mail@psoriasis.demon.co.uk
Thank-you to everyone who distributed Awareness Week packs.
Please contact the office if you would like a Psoriasis Awareness pack
to take to your Doctors, Hospital, Pharmacy, Health Centre, Work place,
Gym, Sports Centre - anywhere where we can raise awareness of the condition!
The pack contains the "Children with Psoriasis - A Parents' Guide,
three new posters, two new bookmarks, 10 Top Tips infocarte, Childrens
Infocarte, Psoriasis What Is It? leaflet, PsoTeen the leaflet for teenagers.
These leaflets (and additional leaflets) and posters are available in
larger quantities for healthcare professionals and those who feel they
may be of benefit to their work, from the office. Should you wish to
receive any of these leaflets individually, please do contact us.
NICE
Technology Appraisal Documents for Etanercept and Efalizumab for the
treatment of psoriasis and Etanercept and Infliximab for the treatment
of psoriatic arthritis
The awaited NICE guidelines for the use of the above biological therapies
for treatment of psoriasis and psoriatic arthritis has been issued.
The documents are available to read on the NICE website, psoriasis and
psoriatic arthritis
The overall summary is as follows:-
• Psoriasis - Etanercept should be offered as an option for treating
adults with severe plaque psoriasis when other treatments haven't worked
(for example ultraviolet radiation, or drugs given by injection or orally,
that is, by mouth), or these other treatments cause side effects, or
the person has another condition or uses another medicine that interferes
with these other treatments. If the person's psoriasis has not shown
a measured response to etanercept after 12 weeks, the treatment should
be stopped. Efalizumab should be offered as an option for treating adults
with severe plaque psoriasis if etanercept hasn't worked, or etanercept
causes side effects which means the person can't take it, or the person
has a condition or takes another medicine that interferes with etanercept.
Further treatment with efalizumab is not recommended unless the person's
psoriasis has shown a measured response at 12 weeks.
• Psoriatic Arthritis - Etanercept should be offered as an option
for treating adults with psoriatic arthritis when the person has arthritis
with three or more tender joints and three or more swollen joints and
at least two other disease-modifying anti-rheumatic drugs (DMARDs),
given on their own or together, haven't worked. Infliximab should be
offered as an option for treating adults with psoriatic arthritis if
etanercept hasn't worked, or etanercept causes side effects which means
the person can't take it, or the person has a condition or takes another
medicine that interferes with etanercept. If the person's psoriatic
arthritis has not shown a measured response at 12 weeks, their treatment
with etanercept or infliximab should be stopped.
Discontinuation
of Halciderm (Halcinonide 0.1%)
We have received notification from Bristol-Myers Squibb Pharmaceuticals
Ltd that they are to discontinue Halciderm the very potent steroid cream.
This is for commercial reasons.
Discontinuation
of Pragmatar® Cream (4% w/w cetyl alcohol-coal tar distillate, 3%
w/w precipitated sulphur & 3% w/w salicylic acid), 25g and 100g.
We have just received notification that Pragmatar Cream will be discontinued
when current supplies are exhausted. It is currently expected that current
supplies will last approximately to March 2007. In a letter from Alliance
Pharmaceuticals, they state that "Pragmatar Cream is being discontinued
because of problems in sourcing one of the active ingredients, cetyl
alcohol-coal tar distillate. Despite an extensive search by Alliance,
the Company has been unable to identify a suitable alternative that
would not require extensive pre clinical and clinical studies to support
a licence renewal.
On behalf of Alliance Pharmaceuticals, please accept my apologies for
any inconvenience this discontinuation may cause."
Alphosyl
HC
Following a manufacturing problem we are pleased to report that Alphosyl
HC has now been sent to Wholesalers and so you should begin to be able
to obtain it again shortly. GlaxoSmithKlyne wish to apologise for any
inconvenience caused.
Vacancy
for Chief Executive at the Skin Care Campaign
The Skin Care Campaign are currently looking for a highly motivated
Chief Executive to lead the organisation through a period of change
and development. More... The closing date for applications is the 11th
October, and the first interviews will be held on the 26th October,
with second interviews held on the 2nd November. For any informal enquiries,
please contact Gladys Edwards on 01604 711129. For more information
on the Skin Care Campaign, please visit their website www.skincarecampaign.org
or for an application pack, please telephone 020 7561 8249 or email
infoscc@eczema.org
Art
Auction
Following the success of the Inside Out Art Competition the finalists
work will be auctioned off on Thursday 7th September at 6.00pm at the
Assembly House, Theatre Street, Norwich. The artwork will be auctioned
by the BBC's David Dickinson. The artwork can be viewed here. The auction
is open to the general public - do come along!
Patient
Opinion.
Patient Opinion is a new website where patients can share their experience
of hospital services and rank particular aspects of care. There's lots
of official information about the NHS available on the internet, which
Trust got 2 stars for example. But what people often want is to find
out what other patients thought of local services. Patient Opinion have
agreed to donate £1 to the Psoriasis Association for each opinion
published about hospital services for people with psoriasis in England,
up to a total of £50.
Patient Opinion is a new website - www.patientopinion.org.uk (or click
on any of the links) - where you can do just that. Patients can share
the story of what happened to them at a particular hospital. Or you
can rate a service and see what others thought of it.
Patient Opinion now covers all hospitals in England and by the end of
March will be able to accept stories and ratings of many private sector
providers.
Patient Opinion is free to use and is run on a not-for-profit basis.
It aims to make the collective wisdom of patients available to other
patients and to the NHS. For Patient Opinion to succeed they need patients
to log in and use their website (click on any of the links) and share
their opinions about hospitals and services for people with psoriasis
in England. If you prefer to share your story over the telephone please
call 0845 113 0012 and tell them what happened to you or someone you
care for.
Psoriasis
- the 'at your fingertips' guide - Second edition Save £5! Only
£12.99 plus p&p to members and supporters of the Psoriasis
Association. Practical information on day-to-day life with psoriasis.
Adalimumab
- Humira
Adalimumab now has its license for use in the treatment of Psoriatic
Arthritis. Please click here for more detailed information.
Diet
Doctors.
Tiger Aspect, the makers of the Diet Doctors series broadcast on channel
5 are looking to make a second series. They are looking for people with
psoriasis, severe acne, eczema, dermatitis, excess sweating, excess
hair, boils or hives and nail infections. If you are interested in taking
part, please email them on dietdoctors@tigeraspect.co.uk
Calling
all people with Psoriatic Arthritis currently on Adalimumab (Humira)
in Wales
Please can you contact Hywel Evans at Arthritis Care with regards to
the All Wales Medicine Strategy Group (Welsh version of NICE). Hywel
would like you to complete a short questionnaire with regards to the
treatment. Hywel can be contacted either via email (hywele@arthritiscare.org.uk)
or telephone (029 2040 1285)
Psoriasis
Association Annual Conference and Annual General Meeting - May 13th
2006
The Association’s Annual Conference & AGM will take place
on Saturday 13 May 2006 at The Park Inn, Northampton from 10 a.m. –
3.15 p.m. Guest speaker in the morning, following the AGM, is Dr Mark
Goodfield, Consultant Dermatologist at Leeds General Infirmary. His
theme will be ‘Patients and their doctors; we’re all in
this together’.
There will be informal workshops in the afternoon, including an art
workshop run by Rhonda Fenwick, an artist from Newcastle and finalist
in the Inside Out Art Competition.
Trade Stands include Dermal Laboratories, Exorex, LeoPharma, Aston Clinica,
Typharm and RDC UK Ltd.
This is an opportunity to find out about the work of the Association,
meet trustees and staff and chat to other members. Do join us.
For more information and to book contact the office by phone 08456 760
076 or email
The
Walk for Skin
The British Skin Foundation will be hosting their biggest ever fundraising
event in venues across the UK between the 13th and 21st May 2006. Walks
are being held in venues across the UK, all are circular routes of between
3 and 5 miles and are taking place at stately homes (such as Wollaton
Hall and Deer Park - Near Nottingham, Himley Hall and Park - Dudley
and Belfast Castle) museums (such as Beaulieu - National Motor Museum,
Cosmeston Lakes and Medieval Village - Near Cardiff and Beamish - The
North of England Open Air Museum - Near Newcastle) and visitor attractions
such as Bramham Park - Leeds, Cheddar Gorge - Somerset, Greenwich Park
- London and Holyrood Park - Edinburgh. To allow you to make the most
of your day many of the venues are offering entry at a reduced rate
to those who have taken part in The Walk for Skin so that you can visit
after your walk. For information regarding The Walk for Skin or the
venues, please visit the website www.walkforskin.org.uk or contact Su
at the British Skin Foundation office on 020 7391 6352 or email. Please
note that people will be able to sign up for the walks online from the
1st Feb - when you register online, don't forget to state that you wish
to donate 50% of your sponsorship money to The Psoriasis Association!
UWE
Teenager Study
The researchers at the University of West England have now finished
collecting their data. Thanks to everyone who has taken part in this
important piece of research.
2006
Psoriasis Association Calendar - sold out!
We are pleased to report the success of the Psoriasis Association 2006
calendar which has now sold out - apologies to anyone still wishing
to purchase one. The Psoriasis Association would like to thank everyone
who has purchased a calendar and supported our christmas appeal - all
donations are greatly appreciated.
SMC
approves use of Dovobet® in Scotland
The Scottish Medicines Consortium (SMC) has announced that Dovobet®
has been approved for initial use in the management of stable plaque
psoriasis within the NHS Scotland. Dovobet® ointment is a topical
treatment containing the vitamin D analogue calcipotriol and the corticosteroid
betamethasone dipropionate, which is used to treat plaque psoriasis
and is licensed for use in courses of up to four weeks.
Infliximab
- Remicade
Infliximab has now received its license for use in moderate to severe
psoriasis. Please click here for more detailed information
Cashmere
Beauty
- The Psoriasis Association had concerns with some claims made in the
advert for Cashmere Beauty cream, consequently these concerns have been
upheld by the Advertising Standards Authority. To read the adjudication
details, please click here.
'Breakthrough'
in skin treatment - Radio / Newspaper article
A recent press article claiming a breakthrough in treating psoriasis
has proved to be rather confusing. The breakthrough by scientists at
Newcastle University was in understanding how and why Dithranol works.
Dithranol has been used in the treatment of psoriasis since the nineteenth
century.
Calling all young people with psoriasis!!
If you are aged between 11 and 18 years and have had psoriasis for at
least 1 year then please consider joining the following study.
Fiona Fox from the University of the West of England, Bristol is doing
research that explores what it is like for teenagers, growing up with
chronic skin conditions, like psoriasis. She hopes to find out about
how you cope with changes to your appearance and what support you get.
Sharing your experiences will help her to understand the needs of other
young people like you.
Fiona is looking for teenagers to join online focus groups. These will
be real time discussions, so you can take part from the comfort of your
own home. If you are interested please follow this link to her web site
and find out more about this research project. Teenager study
Teenagers!
We are in the process of updating the literature we have for teenagers
and need some short accounts (no more than 150 words) of what it is
like living with psoriasis - the positives and negatives, how you cope,
any tips for fellow teenagers etc. Please email your accounts, or write
or post them to the office - we will try to use as many as we can in
the new literature. Please supply your christian name and age so that
we can endeavor to cover the most important issues.
Research
Grants - 2005
Applications are now invited for research grants which offer advancement
in the basic causes of psoriasis and/or increased understanding about
psoriasis and its treatment. Please click here for more details
Are
you a runner?!
The Psoriasis Association has secured some places for the British 10K
London Run on Sunday 3rd July 2005. The race starts at the Hard Rock
Cafe and you will run up Piccadilly, Pall Mall and along the Embankment,
taking in such sites as Trafalgar Square, St. Paul's Cathedral and Tower
Bridge, before running back down the Embankment, across Westminster
Bridge (taking in The London Eye!) and back across Westminster Bridge,
before finishing in Whitehall just past the Cenotaph!
For a pdf version of the route please click here.
If you would like to enter the 10K London run please email or telephone
the office.
Telephone 0845 676 0076
Art
Competition Launched to Help Banish Stigma of Psoriasis
A national art competition, launched this month, is aiming to tackle
the stigma and misunderstanding surrounding psoriasis. The Inside Out
competition, sponsored by Wyeth and in collaboration with The Psoriasis
Association, encourages those affected by the disease to express the
personal impact of the condition via artwork.
The competition is exclusively for people with psoriasis, their families,
friends and carers. Entries can be submitted in a variety of formats
from painting to collage and photography. The competition theme Inside
Out represents the dual impact of skin diseases; both the physical effect
on the outside of the body and the impact on how people feel about themselves
on the inside .Twelve short listed entrants will have their work displayed
at an exhibition in London and will have the chance to win a cash prize
and a place on a weekend art course. The prizes will be presented by
Changing Rooms designer Anna Ryder Richardson at a ceremony in 2005.
For more information and details of how to enter please visit www.insideoutartcompetition.co.uk
or click on the inside out logo. Alternatively you can call 020 8392
8040 for an entry form. Closing date Friday 6th May 2005.
Research
Grants
National council recently agreed to fund five projects recommended by
the Research Committee in September. This brings the total grants awarded
over the last five years to £658 824. To read about the individual
projects please visit the Research page and click on the relevant links.
Response
to Launch of Raptiva
The Psoriasis Association welcome all developments in the treatment
of the complex condition of psoriasis, and the licensing of Raptiva
represents a notable step forward.
Raptiva is intended for patients with the most severe forms of psoriasis
and for those people for whom all other treatments seem to have failed.
Raptiva offers the possibility of a way forward. The overwhelming majority
of people with psoriasis will neither need nor be eligible for Raptiva.
They will continue using the topical and systemic treatments currently
available.
The early results of studies monitoring patients' progress on Raptiva
are encouraging. We would, however, urge careful monitoring, longer
term investigation and comparison with other treatment options in soundly
conducted studies, to establish real long term safety, efficacy and
acceptability. The establishment of a national register would be a helpful
step.
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New Information Worker
We welcome Helen McAteer to the team as the new Information Worker.
Helen started at the beginning of November and is finding her feet in
the office. Helen will be available for those complex queries and questions
as well as keeping the web site and our information up to date. Helen
has a degree in psychology and experience of nursing. She also had an
exciting year out in New Zealand where she experienced the thrills of
bungy jumping and sky diving! Helen is a keen rugby union fan and follows
the local team - Northampton Saints - home and away.
Clinical
Trials - Potential New Psoriasis Treatment Soon To Be Tested at a Leeds
Research Unit
Covance is one of the world's leading contract research organisations
and is based in Leeds. They have been dedicated to helping the pharmaceutical
industry develop medicines of tomorrow since 1986 including blockbuster
drugs such as Viagra and Nurofen. They play a vital part in the drug
development process by testing medicines for safety and effectiveness.
In their latest trial they required volunteers who have moderate to
severe psoriasis to help test a potential new treatment that is currently
under development by one of the world's leading pharmaceutical companies.
The clinical trial will be starting in late 2004. For further information
you can contact them on 0800 591 570, or visit them on line at www.testwiththebest.com
Psoriasis
Association Calendar 2004
Thank you to all the members who took part in our photography competition
and shared their experiences of psoriasis with us in the form of a short
testimonial. From the 90 entrants we received, twelve lucky winners
were selected to be models for the day and have their photograph taken
by a professional photographer. The results of the day’s photoshoot
can now be seen in our 2004 calendar. We would like to take this opportunity
to thank everyone (winners, their friends and families) who spared the
time to come to London and attend the photoshoot and LEO Pharma who
kindly sponsored the initiative.
British
10k Road Race 2003
The Association had 7 people taking part in the British 10K Road Race
which took place on Sunday 13 July. It was a very hot day and so all
of the runners did especially well to get round. So far £2110
has been raised as a result of this event which is fantastic.
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Two
new prescription treatments
2002 saw the launch of two new prescription treatments for psoriasis
– the first for ten years
Silkis
– launched by Galderma is a vitamin D derivative containing calcitriol.It
is suitable for use on the face.
Dovobet
– from Leo Pharmaceuticals is a combination of calcipotriol and
betamethasone and is indicated for mild to moderate plaque psoriasis.
It is a four week treatment with a once daily application.
I’m
A Celebrity
The Association was delighted to be one of the recipient charities in
the recent Granada television programme. Nominated by Rhona Cameron
whose mother is a long standing member of the Association the amount
received to date is £33,400.
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