There is good support from our GSD3 coordinator, the Cori Action Team Support (CATS) and the GSD3 social media channel.
GSD3 coordinator
The coordinator for GSD3 is Sylvia Wilson. She is here to help.
Sylvia became involved with AGSD-UK following the diagnosis of her granddaughter with GSD3. She says that she found the association to be a huge source of information and support.
Now as GSD3 coordinator Sylvia is very pleased to be a small part of what she says is such a wonderful team. She would love to hear from anyone with GSD3, especially those newly diagnosed.
Specialist Care Advisor
AGSD-UK specialist care advisor Elizabeth Davenport is available to help with all aspects of non-clinical support. She can offer a listening ear plus information and advocacy around a whole range of issues, including education, your rights at work, social care, transport, housing, and community grants, so you can get the support and services you need.
Don’t hesitate to contact Elizabeth by email
Benefits Advisor
AGSD-UK benefits advisor Zainib Hussain can help with applications and appeals for benefits such as universal credit, personal independence payment, disability living allowance/child disability payment, employment support allowance and carer’s allowance.
To discuss what you might be entitled to and for help with any claims, just email
We are here for you
The AGSD-UK is here to offer support and be an advocate for anyone affected by GSD3. This can be the person with the condition, a parent or carer, or even a member of an organisation involved with someone affected, such as a school or employer.
Please make use of all that we offer, including our publications, our conference and our support team CATS. You will find all the details in these pages.
Map of people with ketotic GSDs
We maintain a map of people in the UK affected by the ketotic GSDs, including GSD3, to help facilitate finding peer-to-peer support when it is desired. You can ask to have your name and a choice of contact information added to the map.
Go to a new tab with the map page for more details, or contact the Coordinator.
Other support services
Counselling
Need help, especially at diagnosis or during a life crisis? Locate your NHS counselling service via your GP. There can be a waiting list, so don’t delay. There are also some local free, independent counselling services. We know siblings without a GSD can be affected by illness within the family and someone from CATS can speak to you about this. For more in-depth help access local family support services.
Genetic counselling
If you were not offered genetic counselling at diagnosis seek a referral from your consultant to ask about family members being checked and about family planning.
Carers and family members
Carers and family members often need support too. A free assessment is available at local social services. There are many different local carers services and centres.
“GSD and Me” web site
Vitaflo have a web resource for people affected by the liver GSDs. It describes five of the most common hepatic GSDs (0, 1, 3, 6 and 9). It provides useful advice on dietary control and exercise, as well as sections on school, employment and travel.
