↓
 
  • Home
  • Privacy
  • Contact Us
GSG Site icon

gorlin syndrome group

Supporting Families - Promoting Research - Raising Awareness

Gorlin Syndrome Group

Supporting Families - Promoting Research - Raising Awareness

  • Home
  • Guidance and Support
  • About Gorlin Syndrome
  • Genetics
  • Diagnosis
  • Surveillance
  • Treatment
  • Research
  • FAQ

Category Archives: Guidance and Support

Post navigation

1 2 >>

Does your child have special educational needs?

Gorlin Syndrome Group Posted on December 13, 2018 by margaretcostello00@gmail.comFebruary 17, 2019

By law, children with special educational needs and disabilities are entitled to educational support.   Help is available at Parental Special Education Advice (known as IPSEA).  The service offers free legal advice and support to people with a child or children … Continue reading →

Posted in Guidance and Support | Tagged special educational needs

Psychological Help

Gorlin Syndrome Group Posted on December 1, 2018 by margaretcostello00@gmail.comFebruary 15, 2019

Counselling is not commonly offered on diagnosis or even later on.  If you feel you need help in coming to terms with Gorlin Syndrome speak to your GP or Consultant. … Continue reading →

Posted in Guidance and Support

Gorlin Syndrome Patient Booklet

Gorlin Syndrome Group Posted on July 27, 2018 by margaretcostello00@gmail.comFebruary 15, 2019

The Gorlin Syndrome Group launched a patient booklet which we are hoping all our readers will find it a useful resource for individuals and families diagnosed with the condition. The booklet provides information about the condition and includes various sections … Continue reading →

Posted in Guidance and Support
Picutre of girl

Education

Gorlin Syndrome Group Posted on July 22, 2018 by margaretcostello00@gmail.comFebruary 15, 2019

If your child has Gorlin Syndrome it may be useful for you as a parent to advise teachers and other staff at school about your child’s educational and other needs, i.e. use of sunscreen and the need for regular hospital … Continue reading →

Posted in Guidance and Support

Ways to enjoy the sun safely

Gorlin Syndrome Group Posted on May 18, 2018 by margaretcostello00@gmail.comFebruary 15, 2019

Sun damage can cause premature aging, wrinkles and skin cancer. Sunlight may be one of the environmental agents promoting the appearance of BCCs in Gorlin Syndrome. Whatever your age, the best way to enjoy the sun safely and protect your … Continue reading →

Posted in Guidance and Support

Pyschological Impact of Living with Long Term Condition

Gorlin Syndrome Group Posted on May 15, 2018 by margaretcostello00@gmail.comFebruary 15, 2019

Psychological counselling is not commonly offered on diagnosis of Gorlin Syndrome or even later on. If you feel that you need extra help in coming to terms with your condition or any other aspect of your life, don’t be afraid … Continue reading →

Posted in Guidance and Support

Understanding Children and Young People’s Experiences

Gorlin Syndrome Group Posted on May 15, 2018 by margaretcostello00@gmail.comFebruary 15, 2019

Recently published report courtesy of Rare Disease UK. This report is the result of a project that, through imaginative and creative techniques, provided children and young people the opportunity to share their stories, in their own words. This gives us … Continue reading →

Posted in Guidance and Support
Mental Health Report

Living with a rare condition: The Effect on Mental Health

Gorlin Syndrome Group Posted on May 14, 2018 by margaretcostello00@gmail.comFebruary 15, 2019

Rare Disease UK report reveals that: – Living with a rare condition can have a huge impact including anxiety, stress, low mood, emotional exhaustion and suicidal thoughts. – Many of the drivers of poor mental health reflect issues that are … Continue reading →

Posted in Guidance and Support

Carers Support

Gorlin Syndrome Group Posted on April 18, 2018 by Neale Hayward-ShottFebruary 15, 2019

NHS Carers Direct An extremely useful website dedicated to carers. A full range of advice and information for every aspect of a carer’s life. Crossroads Care (link not available at the moment 18.4.18) Crossroads Care is Britain’s leading provider of … Continue reading →

Posted in Guidance and Support

Benefits and Finance

Gorlin Syndrome Group Posted on April 18, 2018 by Neale Hayward-ShottFebruary 15, 2019

Citizen’s Advice Bureau Citizen’s Advice Bureau (CAB) On-line benefits advice. Department of Works and Pensions The Department of Works and Pensions for information about the full range of benefits. Turn2us On-line service which helps people access information on all benefits … Continue reading →

Posted in Guidance and Support

Post navigation

1 2 >>

Recent Posts

  • European Reference Networks
  • Patidegib topical gel phase 3 trial.
  • Vismodegib in the UK
  • Raising Awareness in Scotland
  • Understanding Clinical Trials

Categories

  • About Gorlin Syndrome
  • About Us
  • Clinical Trials
  • Diagnosis
  • FAQ
  • Genetics
  • Guidance and Support
  • News
  • Research and Surveys
  • Surveillance
  • Treatment

Archives

Charity Checkout Donate
connect with others 

Gorlin Syndrome Group

11 Blackberry Way
Penwortham
Preston
Lancashire
PR1 9LQ
United Kingdom

Registered Charity Number 1096361

Link to Charity Commission

 

The Gorlin Syndrome Logo

GSG Site icon
The "gs" in the fingerprint shape represents the patient / individual dealing with Gorlin Syndrome and the second "g" represents the "Group" as a place for the individuals to go for information and support.

Follow Us:

©2019 - Gorlin Syndrome Group
↑