GSD4 coordinator position open, map of the very rare GSDs, details of social media and links for those learning about GSD4.
We do not currently have a coordinator for GSD4. If you would be interested in taking on this voluntary position or have any questions, please contact us through the “Message us” page.
Map of people with other very rare GSDs
We maintain a map of people in the UK affected by the other very rare GSDs, including GSD4, 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.
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
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