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Registered Charity No: 1096361 |
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Supporting patients, their families, friends and carers affected by Gorlin Syndrome
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News and Events
All the latest news and events of interest are listed below, with links to appropriate articles, feedback from attendance at events and other sites. |
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10/06/09 |
Rare Disease UK Press Release
Rare Disease UK has today issued a press release recognising and welcoming the EU Health
Ministers' move to tackle rare conditions. To view the full text visit the Rare Disease website and click on Latest News.
This item has also been included on the Discussion Forum for those of you wishing to respond or make comments. |
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07/06/09 |
Rare Disease UK
Rare Disease Uk urge Government to adopt a National Plan for rare diseases. Further information is available by accessing their website and checking out 'The case for a National Plan for Rare Diseases'. |
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02/06/09 |
Pick Me Up Summer Special
We are extremely grateful to Jane Costello for agreeing to be interviewed on the back of her taking part in the British Skin Foundation 'Walk for Skin' in Kensington Gardens, London in May. Jane was approached by the Press Office at BSF and Press Association with a view to the publishing of an article regarding her experience of living with Gorlin Syndrome.
Jane's interview will appear in the Summer Special of Pick Me Up Magazine due for release here in the UK on Friday, 17th July 2009.
Thanks to Jane for sharing your story and further raising awareness of Gorlin Syndrome.
This information has also been included on the Discussion Forum and can be accessed by clicking on the menu at the left hand side of this page. |
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13/05/09 |
Consultation on the Review of Genetic Testing of Children
As a member of the Human Genetics Commission Consultative Panel, the Gorlin Syndrome group will be participating in the Review of Genetic Testing of Children. The background, recommendations and outcomes are outlined on the Discussion Forum in the News section. |
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13/05/09 |
Development of policies for Preconception Screening
Further detail of this current consultation is available in the News section of the Discussion Forum.
Views or comments about each of the consultations are welcome in the form of responses to the posts on the Discussion Forum or by email via the contact us form. |
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11/05/09 |
Sun Awareness Week 11th May 2009
National Charity Sckin announced that the skin cancer awareness initiative
co-ordinated by the charity and supported by The Sun newspaper and the leading
advertising agency McCann Erickson, has commenced with the initial article –
Suntan.con ! In print and on line at www.thesun.co.uk/sol/homepage/news/article2422109.ece
Further information about Sun Awareness Week and the article below is included on the Discussion Forum. |
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12/05/09
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Say no to 'Pay as you Cancer'
Sckin has formed a partnership with St.Tropez to set up a Parliamentary Lobbying Group
campaigning for greater awareness, education and safety regulations for the use
of UV tanning in the UK. Skcin fully support
St.Tropez in their mission and we are appealing to the UK public to get behind
the campaign by signing the online petition that has just been launched. The
petition requires 10,000 signatures and will then be presented to Parliament,
alongside a mandate for change.
Let's not waste
anytime - please register your support now at www.sttropezskinsmart.org |
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29/04/09 |
NHS Performance Framework
For details of the NHS Performance Framework Implementation Guidance click here |
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29/04/09 |
Annual Patient Conference
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31/03/09 |
Spring 2009 Newsletter
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18/03/09 |
Questions on Guest Book
A number of postings on the Guest Book ask specific questions about Gorlin Syndrome which is fine but the best place to generate responses is on the Discussion Fourm. It only takes a few minutes to register and members will be able to post a reply and add theiir comments or offer to share similar experiences. Check out the link here. |
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18/03/09 |
Discussion Forum
If you haven't already done so check out the Discussion Forum and join in the discussions. You can catch up on events, surveys, latest news and add your comments should you wish to do so, as well as check out who else is registered. We look forward to welcoming you. |
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24/02/09 |
British Association of Dermatologists Conference 2009
Once again the Gorlin Syndrome Group will be represented at this event being held at the Scottish Exhibition and Conference Centre in Glasgow 7th - 10th July 2009.
This is an important event in our calendar and enables us to further raise awareness of Gorlin Syndrome with the healthcare professionals who attend the event each year.
This year John Dooher and Margaret Costello will represent the group and make links with many Dermatologists and Specialist Skin Cancer Nurses working in dermatology settings. |
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10/02/09 |
Walk for Skin 2009
The Gorlin Syndrome Group is pleased to annouce its affiliation again with the British Skin Foundation 'Walk for Skin 2009'. The Walk for Skin is the biggest multi-charity fundraiser for skin disease, and is taking place at 11 venues across the UK. More detail on the Forum or visit www.walkforskin.org.uk for information and to register. |
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09/02/09
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International Rare Disease Day 2009
Visit the Rare Disease website for details of this campaign dedicated to improving the quality of life for people living with rare conditions, and in particular to ensuring equality of access to diagnosis and care. On the home page of the website there is a link to a Rare Disease Group on Facebook where people from around the world are supporting the campaign. Additionally, there is a link to YouTube and a Genetics video which is of interest - well worth a look.
The main aim of Rare Disease Day 2009 is to raise awareness with policy makers and the public of rare diseases and the impact on patients' lives.
You can add your support by logging onto the website and following the links to Facebook and YouTube.
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05/02/09
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Comprehensive information for European patients and healthcare professionals about genetic testing and research. Check out the site and take the on-line patient survey. |
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05/02/09 |
Bionews
Check out BioNews, the free weekly digest of news stories in the field of assisted reproduction and human genetics |
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05/02/09
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EU Directive of Animal Research
Following the European Parliament's review of the regulation of animal research in the EU, the draft regulation is now making rapid progress
through the lengthy regulatory process.
Some of the proposed changes to
the regulation have the potential to slow or stop research in some areas, and
severely restrict the breadth of research that may be undertaken in the EU. One
of the most important topics of this review is that of Non-Human Primates. There
is a proposal to severely restrict this research, and even the potential for a
phased timetable for their withdrawal. With no alternatives on the horizon this
would be disastrous for research in Europe. It is therefore important that
patients contribute to this debate by communicating to their MEPs how important
good quality biomedical research is for them.
Click here for information about the Regulation and its review: |
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25/01/09
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AGM
The AGM took place yesterday, 24th January 2009 at the NOWGEN Centre in Manchester.
No norminations or expressions of interest received for positions to Executive Committee.
John Dooher had taken over the role of Acting Treasurer following the resignation of last Treasurer in May 2008. Thanks are extended to John for his continued commitment.
Sally (Chair) and Margaret (Secretary) having served 3 years both expressed their interest and continuing commitment to the work of the group.
The following persons were elected to serve in the named roles:
Sally Webster - Chair
Margaret Costello - Secretary
John Dooher - Treasurer
Special thanks are extended to those who took time out of their weekend to offer their support for the work we do, participate in the AGM and join us for lunch. It was a pleasure meeting and spending time with you. |
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25/01/08 |
Annual Patient Confernce
At a meeting of the committee yesterday agreement was reached to look into the feasability of organising this annual event. Planning is now underway so watch this space! |
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25/01/08 |
Review of Prescription Charges
Have your say on this important matter by click here
Cancer patients urged to apply for free prescriptions from today.
People being treated for cancer will be eligible for free
prescriptions from 1st April and can apply for free prescriptions from
today.
The new scheme, announced by the
Prime Minister in September last year, abolishes NHS prescription
charges for everyone undergoing treatment for cancer, the effects of
cancer, or the effects of cancer treatment.
Up to 150,000 patients already diagnosed with cancer are expected to
benefit, and may save £100 each year in prescription charges.
All cancer patients are entitled to apply for a 5-year exemption
certificate, which will entitle them to all their NHS prescriptions
free of charge, not just those relating to cancer. The certificate can
be renewed as many times as necessary and will not have to be returned
if the patient's condition changes.
Application forms can be collected from GP surgeries and oncology
clinics from today and must be countersigned by the patient's GP,
hospital doctor or service doctor.
Applications received by 24th March will be processed in time to be
used for 1st April. Patients who do not receive for their certificate
in time may have any prescription charges they have paid since the 1st
April refunded.
If you are unsuccessful let us know. |
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22/01/09 |
Launch of NHS Constitution
Lord Darzi's review of the NHS, High Quality Care for All concluded
last summer that there was a case for an NHS Constitution to enshrine
the principles and values of the NHS in England. The constitution will
put in one place what patients, staff and the public can expect of the
health service. The Constitution, the first of its kind in the world,
was signed by Prime Minister Gordon Brown, Health Secretary Alan
Johnson and NHS Chief Executive David Nicholson. The Constitution
brings patients existing rights together in one place so they know what
they are legally entitled to - and how they can exercise their rights
as well as understanding their responsibilities. It also contains a
range of pledges to patients, public and staff, which the NHS is
committed to achieving. For further detail go to http://www.dh.gov.uk/en/Healthcare/NHSC ... /index.htm
The
NHS Constitution, published on 21st January 2009, establishes a right
to choice and to information to support that choice. The right makes
choice a core feature of a responsive NHS. The Constitution states:-
"You have the right to make choices about your NHS care and to
information to support these choices. The options available to you will
develop over time and depend on your individual needs."
From 1
April 2009 patients will have the right to choose where they have
treatment when they are referred for their first outpatient appointment
with a service led by consultants and to information to support that
choice. More information about this aspect can be seen at http://www.dh.gov.uk/en/Healthcare/Pati ... /DH_093410
Unfortunately
the constitution does not legally bind anyone to anything so does not
extend any more rights or powers to any of us, but does at least draw
together and outline what our rights as patients are.
Anyone wishing to comment on this is able to do so by logging onto the Forum (link to left).
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22/01/09
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Review of Prescription Charges
The Department of Health are currently undertaking a review of
Prescription Charges that will consider how to implement exemption from
prescription charges for people with long term conditions.
Exemption for people with long term conditions was announced by the Prime Minister last year.
Patient
Support Groups have been approached with request for a written
submission is response to a set of questions relating to the review
which will assist in the formulation of recommendations to Ministers
about how to exempt people with long term conditions from prescription
charges and how this exemption can be phased in. The closing date for
written submissions is 27 February 2009.
It is our intention to respond to
the above request and discussion will take place at our next
committee meeting. Further detail about this item is included on the Forum (link to left). We are happy to take forward your views and comments and we would hope that they will assist in forming our response.
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11/01/09 |
Department of Health - Patients to
have a say in improving GP services
More than five million patients in England are being
asked for their views on how to improve family doctor services in a new survey
launched by the Government earlier in the week. Results from the national survey will be used
to drive changes to GP services and rewards for GPs who provide fast, convenient
services.
This is the third year the Department of Health has run the GP patient
survey, which focuses on patients' experiences of visiting a GP. In last year's
survey patients called for quicker access to GP appointments, in response to
this over half of all GP practices now offer extended opening hours making it
easier for patients to get appointments at times that suit them.
http://nds.coi.gov.uk/Content/Detail.asp?ReleaseID=388740&NewsAreaID=2 |
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11/01/09 |
The Skin Care Campaign (SCC) confirms that the above survey is a
great chance to back-up what they are campaigning about for primary care
services. SCC has asked us to encourage people to use the opportunity to highlight the following key messages
- for
primary care services to improve there has to be increased skin care education
for pre and post registration GPs, nurses and pharmacists
- primary
care dermatology support and services would undoubtedly improve if the DoH
supported specific dermatology QoFs
- PCTs
must ensure new legislation regarding GPs with a Special Interest (GPSIs) is
fully implemented and adhered to
- all GPs
and GPSIs must be encouraged, and not disincentivised, from referring on to
secondary care whenever clinically appropriate
- that
fast and convenient services must also provide best possible care to be
effective
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02/12/08 |
British Skin Foundation Walk for Skin
We were delighted to receive a cheque to the value of £386.50 from the British Skin Foundation earlier in the week. The funds were raised by participants who opted to pledge 50% of their sponsorship to the Gorlin Syndrome Group for Walk for Skin 2008.
We are extremely grateful to those of you who took part in the walks and supported us. Thank you so much your efforts and the sponsorship. Your contribution ensures the continuing work of the group and for that we thank you. |
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02/12/08 |
Walk for Skin 2009
We will be registering for the Walk for Skin 2009 events and look forward to your continuing support. It is likely that we will receive further details about the events early in the New Year. Watch this space for information.
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Written and produced by Professor P A Farndon, Clinical
Geneticist at the National Genetics Education and Development Centre UK, Jim
Costello (deceased) & Margaret Costello, unless otherwise stated. |
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