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Gorlin Syndrome Group

Supporting patients, their families and carers
 
Registered Charity No: 1096361
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. 
 
 
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.
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.
01/12/08
Gorlin Syndrome Group Annual General Meeting
Planning is now underway for the Annual General Meeting which will take place in January 2009. Details of the event including date, venue and agenda will be released shortly
 
18/11/08
Involvement Opportunity
The NHS in the East of England has carried out a major review and consultation to produce a ten year strategy - Towards the best, together. In order to implement the challenging intentions of the strategy a series of Programme Boards are being set up. The NHS is now looking for someone with or affected by a long term condition to Co Chair the Long Term Conditions Programme Board.
 
The time commitment would be equivalent to 1 day a week and be based mainly at the Strategic Health Authority offices in Fulbourn, Cambridge. The person appointed will work closely with Clinical Co Chair of the LTC Programme Board and be instrumental in driving the implementation of Pledge 7 We will improve the lives of those with long term conditions. Closing date for the post is Monday, 24th November 2008 with interviews being held on the morning of 5th December 2008. The first meeting of the Board will be 1 - 4 pm on Thursday, 11th December 2008.
 
For further information and discussion about the role, please contact Heather Ballard on 01223 597668.
 
For an information pack and application process contact Helen Sykes via email on hr@eoe.nhs.uk or by telephone on 01223 597636 quoting reference number eoe1142.
 
12/11/08
Rare Disease UK
Paul Rodgers at the Independent on Sunday is interested in commissioning a piece about Rare Disease UK and rare diseases in the UK. He would like some patient case studies and is looking for people to interview. Paul is looking for the following types of stories.
  • A paitent or family who are members of Rare Disease UK to discuss why they feel improving services for rare diseases in the UK is vital.
  • Look at a patient journey, i.e. have you had problems navigating the NHS in order to find the best services for you? What were the hurdles and how did you find poeple who knew about your condition? Have there been any useful tools that helped (eg Family Route Map)? Did finding the patient support group provide guidance?
At this stage if you would like to be involved kindly contact Paul Rodgers on p.rodgers@independent.co.uk 020 76896 1584 (until Thursday this week) and then 07803 167 943. Paul is happy to have an informal chat to you if you would like further information.
 
03/11/08
NHS Connecting for Health
Current public consultation on the use of patient information. Visit the Influencing Change page of the website for details on how to take part in this consultation.


 03/11/08
Public Consultation in Scotland
Do you live in Scotland? The Scottish Government has launched a consultation of a Patient's Rights Bill. GIG are keen to speak to as many patients, families and carers as possible to find out if the Government's idea of how patients should be treated is the same as paitent's themselves. If you would like more information email GIG
 
03/11/08
Volunteers needed for Research
Volunteers required in the North West of England who would like to help improve services for families with genetic conditions. The researcher is looking for people to assist in this research. More iinformation from marion.macallister@manchester.ac.uk
Oct 08
British Skin Foundation
The British Skin Foundation (BSF) has launched the country's largest ever skin health campaign, Respect your skin.  Each month information about each topic will be available in the media and on their website. Topics to be included are: Cosmetic Procedures (October) and Skin Disease (to include Skin Cancer in November).  BSF wish to get an overall idea of any issues and where their focus should be and have launched monthly surveys. To take part visit the BSF website.

 



 


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.