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Crohn's and Colitis UK Awards 2010-2012
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Crohn's, Colitis and
Employment - from Career Aspirations to Reality
A joint partnership was formed between Abbott UK and
Crohn's and Colitis UK to demonstrate the impact of Crohn's
disease (CD) and ulcerative colitis (UC) on a patient's
working life and to call for timely and appropriate diagnosis
and treatment.
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Overcoming Ignorance
of Colitis and Crohn's Disease
Addressing public ignorance of IBD is vital and overcoming
media sensitivity to discuss the key symptom, diarrhoea,
requires innovation. NACC spearheaded the launch of the
new Service Standards for the Healthcare of People with
IBD, successfully addressed the lack of a National Service
Framework and secured access to anti-TNF maintenance therapy
via NICE.
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Crohn's and Colitis
UK and its consultancy Healthcare Solutions PR were
runners-up for the Healthcare & Pharmaceutical Award for
its campaign Overcoming Ignorance of Crohn's and colitis
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Finalist: Hertfordshire
Business Awards 2010 for the Business in the Community
category, and the only charity to reach the Business Awards
final
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Crohn's and Colitis UK London Walk - 22 June 2013
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 Our
London Walk on 22 June 2013 will be officially opened at
Victoria Embankment Gardens by Juanita Ingram, Ms World
International 2012.
We anticipate over 1,000 walkers on the day, to raise
awareness and funds, and have a lot of fun!
Juanita says that her Ulcerative Colitis symptoms went
undiagnosed for some time, but flared up during her
first pregnancy. She felt she was in a race against time
as she failed to gain weight during her pregnancy and
was told she would not be able to carry it through to
term. When finally diagnosed, Juanita, who has a
Doctorate in Law and is a qualified Accountant, says she
felt very depressed but that her faith pulled her
through. She says that the fatigue has been overwhelming
at times, as well as the discomfort and ever-present
pain of her condition. She says, "Everyone is different
and everyone experiences the symptoms in different ways
... but we are all more than this disease."
Not too late to
register to join in!
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Crohn's and Colitis UK National Raffle 2012
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Winners
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Prize
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Number
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Name
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£1,000
£500
£250
£50
£50
£50
£50
£50
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311048
322019
328907
147288
051339
322512
086474
054484
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A.
Shott
G. Willingham
E. Cole
M. Steel
E. Gilmore
R. Swann
D. Taylor
C. Smith
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We have had a fantastic response to
our first National Raffle, raising much-needed funds to
find a cure for these lifelong, inflammatory bowel diseases.
Even celebrity Ambassadors and Champions
pitched in to lend a hand!
Almost £68,000 has been raised in ticket
sales and donations. The draw was held in our St Albans
offices, with the winning tickets being drawn at the charity's
annual thank you lunch for its volunteers, by its guest
Mel Hilbrown, a director of the St Albans Enterprise Agency
and of the St Albans Chamber of Commerce.
The winner of the £1,000 first prize
works in St Albans at a local company, Murco Petroleum Limited,
whose staff purchased over one hundred tickets as part of
their support of the locally-based national charity. Other
winners are based in Wales, Scotland and England - proving
that you're never too far away to buy a ticket from one
of the charity's supporters!
The charity was also really delighted
to receive a cheque from Mel on behalf of the St Albans
Chamber of Commerce for £800, being the charitable proceeds
from its Christmas Raffle …. Winners all round!
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IBD: Sport and
Fitness
In a year when sport has such a high
profile as a result of 2012 Olympics we wish to explore
the sport and fitness habits of people with IBD through
a new membership survey.
We hope that by tracking and comparing
sports and fitness activity, challenge ideas and progress
(or lack of progress, for whatever reason) - we will get
a clearer view of IBD: Sport and Fitness issues, to promote
through the media during 2012 in order to improve understanding
and inspire others
 Click
here to take part in the survey
Deadline for responses now further extended to 19 March
Click
here to visit our 2012 Challenge website
Download
our Challenge Leaflet
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Information about Swine Flu
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Anyone concerned about Swine Flu can
get more information from the following sources:
England and Wales:
www.nhs.uk or the Swine Flu Information Line on 08001
513 513
Scotland:
www.nhs24.com or NHS 24's dedicated flu line on 08454
24 24 24
Northern Ireland:
www.dhsspsni.gov.uk or the N.I. Swine Flu Helpline on
0800 0514142
Swine Flu and immunosupression
IBD Patients on standard doses of immunosuppressant therapy
(azathioprine or mercaptopurine) or anti-TNF therapy should
not be exceptionally susceptible to Swine Flu and are advised
to continue with their treatment, as the risk of active
IBD and subsequent need for drugs such as steroids would
carry a greater risk than that of contracting the infection.
However, you may wish to discuss your current treatment
with your Gastroenterologist or IBD Nurse Specialist to
check whether your dose, drug or recent blood tests indicate
that you could be at higher risk.
If you are receiving an immunosuppressant
and have a household contact with flu you should consult
your GP who may, in consultation with your IBD specialist,
suggest that you take anti-viral medication (Tamiflu) as
a precaution. (Current guidance from the Health Protection
Agency on the use of prophylactic Tamiflu can be found at
www.hpa.org.uk)
What to do if you think you have
Swine Flu
If you have flu-like symptoms you should stay at home and
call your GP immediately for advice. Tell your doctor that
you have IBD and about any medication you are taking.
Early doses (within 48 hours of symptoms)
of antiviral medicines such as Tamiflu are thought to be
effective in treating people with Swine Flu. There is no
known interaction between Tamiflu and standard IBD drugs,
and it is not thought to have any harmful effects on IBD
itself.
If you are receiving anti-TNF medication
(Infliximab or Humira) you should phone your IBD Nurse or
contact person if you have a fever or flu-like symptoms
as your treatment may need to be deferred.
Swine Flu vaccine
The Swine Flu (H1N1) vaccination is now available. Like
the seasonal influenza A and Pneumovax vaccines, the H1N1
vaccine is inactivated and considered safe to use even in
people whose immune system is compromised. There is also
no reason why the swine flu vaccine should adversely affect
the state of your Crohn's Disease or Ulcerative Colitis.
NHS Choice states that the priority
groups for vaccination include people between the ages of
six months and sixty five years who are on immunosuppressive
drugs: these include prednisolone (in a dose of more than
20mg/day), azathioprine, mercaptopurine, methotrexate, infliximab
and adalimumab. Other members of your household may also
be vaccinated if your immune system is compromised.
Furthermore, it is recommended that
people on immunosuppressive drugs should receive not only
the H1N1 vaccination, but also seasonal flu vaccination
and Pneumovax (which is to reduce the chances of getting
bacterial pneumonia).
We suggest that if you are on any immunosuppressive
drug, and have not had Swine Flu, you talk to your GP soon
about having these vaccinations. If in doubt about your
treatment, it would also be sensible to contact your Gastroenterologist
or IBD Nurse Specialist.
Specific advice regarding swine flu
is likely to change over the next 6 months. NACC will therefore
update the advice to patients whenever necessary.
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CHRISTMAS CARDS
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 Have
your ordered your Christmas Cards? It isn't too late - yet!
ONLINE ORDERING ENDS
Tuesday 4 December
at 9 AM
Christmas is a special
time of year but also very busy, so save some shopping time
and
click here to select your cards and place your order.
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Forthcoming Events
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CAN YOU SPARE A DAY in MAY?
This year's National Walk in London
(Sat 26 May) still needs lots of people to register
to participate as walkers.
Please don't think that if you can't
raise any sponsorship, you won't be welcome! We'd love to
see you anyway because by just wearing the T Shirt and walking
with other like-minded people you'll be helping raise awareness
of Crohn's and Colitis.
Register online or call 01727 734485 for details
NEW! If you can't WALK WITH US… then
TALK ABOUT US (wear the sticker!) - for just £6 (+p
+ p) we'll let you have one of our NEW! USB sticks loaded
with a presentation, posters and film about our 2012 theme
- you can show this at work, at school or just to friends
and family to help raise awareness.
Crohn's and Colitis Month is May 2012
Our theme for Crohn's and Colitis Month
is IBD Sports and Fitness and we urgently need more
media volunteers to tell their story about good or bad experiences.
(Click
here for details.)
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BSG / NACC Meeting
Liverpool 25 March 2010
Ticket Information.
Details of how to request a ticket are not yet available. If you leave
your name and email address in the boxes below we will email
you the details when known. We expect this to be in early
February 2010
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2013
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Our 2013 PR theme is Me
and IBD:
"Facing the Future - School
and Beyond"
In preparation for this, we have a
new microsite where young people can take a survey,
tell their stories, post a short film clip (moderated via
our You Tube channel) and put forward ideas for better ways
of communicating with their Healthcare professionals, their
teachers and employers.
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Great news, we have extended the deadlines for our Me & IBD
weekends
 Me and IBD - Strategies for Living
Aged 18
to 25?
Want a
weekend away?
Want to
socialise and meet others with IBD?
Want
help and practical advice for living?
Me and IBD Strategies for
Living!
Summer Camp 2013
Need a weekend away without IBD getting in the way of having some fun?
Aged 14 to 17?
Book now to reserve your place
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Inflammatory
Bowel Disease Northwest Patient Education Programme.
The Inflammatory Bowel Disease Northwest
Patient Education Programme is a project to provide regular
education for people and their families living with IBD.
The sessions are delivered by doctors, nurses, psychologists
and dieticians from Trusts including, Bolton NHS Trust,
Salford Royal, Central Manchester, South Manchester, Countess
of Chester, Acute Pennines, Royal Liverpool, Aintree, Lancashire
Teaching Hospitals, Wigan and Blackburn.
There is a central venue, with easy
motorway access and parking with sessions held on weekdays
and weekends in order to make them accessible to all.
All the
topics have been chosen by IBD patients and can be viewed
here - where you will also find an application form
to register for any of the sessions.
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Office Hours Christmas
2011
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During the Christmas 2011 and New
Year 2012 period the Crohn's and Colitis UK Office and
Information Service will be available as follows:
Information Service - 0845 130
2233
Fri 23 Dec - closed.
Wed 28 to Fri 30 Dec - 10.00 am to
12 noon.
Tue 3 Jan 2012 - normal hours (10.00
am - 1.00 pm).
Crohn's and Colitis Support -
0845 130 3344
Fri 23 Dec 2011 and Wed 28 to Fri
3o Dec - 1.00 - 3.30 pm and 6.30 - 9.00 pm.
Tue 3 Jan 2012 - normal hours.
Administration Line - 01727 830038
Fri 23 Dec - closed.
Wed 28 to Fri 30 Dec - 9.00 am -
12.30 pm.
Tue 3 Jan 2012 - normal hours.
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Anastacia
Crohn's and Colitis UK Ambassador
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Anastacia Supports Crohn's and Colitis
UK
Download
poster
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Roz Prescott, Lord and Lady Prescott's daughter-in-law,
is a Crohn's and Colitis UK Family Ambassador
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Roz Prescott, Lord and Lady Prescott's
daughter-in-law, Supports Crohn's and Colitis UK
Download
poster
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Phone Lines
26 Sept 2012
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There is a fault on all telephone lines
into the office. If you need to get in touch urgently
please email
enquiries@crohnsandcolitis.org.uk
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Online Merchandise Sales
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The online merchandise
pages will be closed to update stock items from 09:00 to
midday on Friday 5 April 2013.
Go to the
online shop
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Welcome to Crohn's and Colitis UK
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We are delighted to welcome onboard new Champion for 2013 Rylan
Clark
TV personality Rylan,
is fronting the charity's media push to raise awareness during May,
Crohn's and Colitis month, and is being interviewed by TV and radio
– to talk about the work of the charity.
His personal experience
of living with IBD comes from his mum, who is a Crohn's sufferer
– and as a result he is keen to use his growing public profile to
help the charity reach out to those who may not be aware of the
help and information that is offered.
Suzi Clark, Director
of Marketing and Fundraising at the charity says "Rylan has already
played a key role in engaging his young teenage fans through social
media. This is the age-group we are particularly keen to target
with our information and support, along with the professionals who
work with them. We are very grateful that Rylan has so generously
offered to use his growing public profile to help promote our work.
Often, it is the family member/carer/supporter of the person living
with IBD who may have a very real understanding of the devastation
that living with these inflammatory bowel conditions can cause to
family life, individual education and career prospects, and the
self confidence of someone they care about. Giving them a voice
will help us to bring these hidden conditions to the attention of
the wider public, so that with better understanding, people with
IBD can lead better lives."
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Rylan is interviewed on Sky TV Sunrise,
alongside young charity volunteer Amber Gamble
Watch the video by clicking here
Radio interview podcasts:
BBC Radio Essex
BBC Southern Counties Radio Surrey
BBC Southern Counties Radio Sussex
BBC Three Counties Radio
BBC Wales
BFBS Radio 1
DTR Downtown Radio
Free Radio Coventry
Hot Radio
Pirate FM
Real Radio North West
Signal FM
Viking FM 96.9 |
Crohn's and Colitis UK aims to improve life for everyone
affected by Inflammatory Bowel Disease (IBD), the most common forms being
Crohn's Disease and Ulcerative Colitis. Together these conditions affect
about 250,000 people in the United Kingdom.
The charity brings together people of all ages who have
been diagnosed with IBD, their families and the health professionals involved
in their care. We welcome support from anyone who would like to help us
in our work, whether as a member, volunteer or by raising funds. We hope
that you will find the information you are looking for within our website.
If not, please contact us.
Crohn's and Colitis UK provides:
an
Information Service covering all aspects of IBD available by telephone
and email
the
Crohn's and Colitis Support (formerly NACC-in-Contact) - a chance to
talk confidentially with someone who has personal experience of living with
IBD
a network
of local
Groups and opportunities to volunteer throughout the UK
a range
of
Information Sheets and Booklets on specific topics
Understanding
Colitis and Crohn's Disease and
Living with IBD - information leaflets for someone who has just been
diagnosed with Crohn's Disease or Ulcerative Colitis (also
in other languages)
information
and support for
parents who have a child diagnosed with IBD
IBD
and Me - information and discussion board for 16 - 29 year olds
guidance
on benefits
and how to apply for
individual
personal grants
campaigning
for better support and services for people who have IBD
£500,000
a year investment in IBD research
You can join Crohn's and Colitis UK
We have almost 31,000 members throughout the UK and
membership
is open to anyone affected by IBD, to health professionals and to anyone
who wishes to support our work. For just £15 per year, members receive an
initial information pack, NACC News - our informative quarterly newsletter
covering the latest in IBD research and treatment as well as personal experiences
of living with IBD - and a combined membership and 'Can't
Wait' Card to assist with emergency access to toilets. To join
click
here
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Quick Links
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Me and IBD Strategies for Living
Theme for 2013
2013 Walks
Meet our CEO
Vacancies
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Prescription Charges Survey
We would like to thank all
those who completed the prescription charges
survey. As the leaders of the Prescription Charges
Coalition of over 20 organisations calling for
an end to unfair prescription charges for people
with long term conditions, we needed to hear
how these are affecting people's daily lives
- and over 3,500 of you told us. We will now
be writing up the survey results into a report
and using this to raise awareness of the issues
early next year. We would like to ask for your
help in promoting this with your MP and others
when it is ready.
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Adverse Weather
The office is open, but due
to the adverse weather conditions opening and
closing times will be flexible and there may
be reduced staff capacity to deal with your
queries, telephone calls, e-mails and letters.
If you are trying to contact us we would appreciate
your patience and we will respond to you as
quickly as possible.
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2013 Summer Camp for 14 to 17 year olds
Ambassadors
Champions
NW Patient Education Programme
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Chronic Conditions Survey
Have you been diagnosed with
a chronic condition (for example, Crohn's Disease
or Ulcerative Colitis)? If the answer is yes,
and you are aged 18-25, The Work Foundation
would like to hear about your experiences in
living with the condition, receiving treatment
and benefits, managing your job, finding or
leaving work. This survey builds on work previously
undertaken by Crohn's and Colitis UK on IBD
and employment. Your participation in this short
survey will help a major European initiative,
the Fit for Work Europe Coalition, make change
happen for people with chronic conditions in
the UK. please
complete our on-line survey
Every care is taken to protect
the confidentiality of the information you provide:
your responses will be absolutely anonymous.
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Work Capability Assessment
As the leading UK charity
working with and for people with Inflammatory
Bowel Disease (IBD), Crohn's and Colitis UK
are concerned about the difficulties and distress
encountered by people with these conditions
when applying for Employment and Support Allowance.
About 250,000 people in the
UK are affected by Crohn's Disease and Ulcerative
Colitis (collectively known as IBD), the majority
of whom are diagnosed in their teens or early
twenties. There is no known cure for IBD, and
people living with these lifelong conditions
experience symptoms including frequent diarrhoea,
incontinence, acute abdominal pain, profound
fatigue, weight loss, and a constant urge to
have a bowel movement.
Crohn's and Colitis UK provides
information and support to people in the workplace
and those whose symptoms mean that they are
not able to work. We also provide information
to employers and decision makers to raise awareness
of the needs of people living with these little
known or understood conditions. We are campaigning
for improvements to the Work Capability Assessment,
and are currently working with the Department
for Work and Pensions and a group of other charities
to look at the current Work Capability Assessment,
and the way it is applied, with a view to making
it more responsive and appropriate to the needs
of people with long term fluctuating conditions
such as IBD.
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Visit the Me and IBD microsite
It has come to our attention that our newsletter has the
wrong number printed in our Strategic Plan summary.
Our number is 01727 830038. We are sorry for any inconvenience
caused.
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Recent Website Additions
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Our London Walk on 22 June 2013 will be officially opened at Victoria Embankment Gardens by Juanita Ingram, Ms World International 2012.... read more
Crohn's and Colitis UK is advertising for an Information Officer.... read more
Personal Independence Payment
As of 10 June 2013, you are able to make a new claim for Personal Independence Payment if you live in England, Scotland and Wales. You will no longer be able to make a new claim for Disability Living Allowance if you are between 16 to 64.
Crohn's and Colitis UK has commissioned a guide for adults with Ulcerative Colitis and Crohn's Disease who are seeking to claim Personal Independence Payment.
If you would like to talk about PIP, please contact Crohn's and Colitis UK's Information Service on 0845 130 2233 or +44(0)1727 734470 or info@CrohnsAndColitis.org.uk between 10am and 1pm Monday-Friday.
We are also monitoring PIP by seeking views from people with IBD that have made a claim. A brief, anonymous survey is available here. Please consider completing this after you have received your PIP decision..... read more
Crohn's and Colitis UK has announced its 2013 Medical Research Awards.... read more
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Managing Fatigue in IBD
Crohn's and Colitis UK have been awarded
a £481,242 grant by the Big Lottery Fund to undertake a
project on fatigue in IBD. The 4 year research project,
which began in July 2010, examines the causes of fatigue;
pilots a fatigue assessment tool; and explores interventions
to improve pain management in IBD.
Click here to visit the project website
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Crohn's and Colitis UK is the working name for The National Association
for Colitis and Crohn's Disease (NACC)
Become a Member
Make a Donation
Merchandise Items
Online Shop OPEN
Crohn's and Colitis
inScotland
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2013 Appeal
This year we are focusing on the devastating impact Crohn's and
Colitis can have on young people. Just some of the challenges young
people face include: falling behind in education, struggles with
employment, difficulty maintaining a social life and relationships
and moving from paediatric to adult health care.
Our services have benefited thousands
of young people and their families over the years, and we wish to
ensure they can continue to help in the future.
Click here to download our appeal letter
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 Whether
you want to walk that extra mile, hit the track running, boogie
round a ballroom, take part in a debate at our national conference,
or cheer from the sidelines ... there's something for everyone,
so please
click here and support us.
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