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Gorlin Syndrome Group is a small but dynamic UK registered charity with ambitious plans for future expansion.
The purpose of the charity is to provide information, education and support to those suffering with Gorlin Syndrome, their families and carers. It also actively promotes medical research.
Gorlin Syndrome is a rare inherited disorder that affects many parts of the body, especially the skin and the skeleton. Previously known as naevoid basal cell carcinoma syndrome (NBCCS) and Gorlin-Goltz syndrome, the disorder increases the risk of developing various cancerous and noncancerous tumours. For more information download our GSG booklet via our website: www.gorlingroup.org.
The Group is organised and run on a voluntary basis by a group of Trustees, some of whom live with Gorlin Syndrome themselves and is totally reliant on donations, sponsorships and regular ‘givers’ to continue its important and valuable work.
We currently have vacancies on our Board and to help us grow we need experienced members of the public to join us. If you have just a couple of hours a week that you could spare us then read on…
There are no exceptional prerequisites (other than those prescribed by the Charity Commission) or UK locational restrictions as most of our meetings are virtual. We are particularly keen to recruit members who have one or more of the following skills:
- Expertise in Marketing, PR & Media
- Experience in Fundraising
- Dermatology or similar medical expertise
Trustees meet virtually for approximately 1.5 hours monthly on Sunday evenings between 7.30 pm and 9 pm. The Board consists of a nominated and elected Chair, Secretary and Treasurer and is responsible for setting the strategy and policies of the Gorlin Group as well as conducting day to day operations with due diligence and in the best interests of the Group.
To find out more about this highly rewarding role and joining our Board, please contact Vicky on 07968080226 or email vicky@gorlingroup.org
– Interested? Why not speak to us now –