About us

AGSD-UK exists to support people affected by Glycogen Storage Disease to live positively with this complex and challenging metabolic disorder.

The condition has multiple variants affecting the liver or muscles, with differing symptoms that can have a profound impact on quality of life. For people with some variants, symptoms may result in the need for liver transplantation, artificial ventilation or wheelchair use and can be life limiting or life threatening.

Many of those affected are dependent on complicated feeding or medical regimes. These can be draining and isolating for the children and adults affected and their families, with significant emotional support and advocacy needed.

That’s where AGSD-UK comes in.

AGSD-UK is the only UK charity for people with any GSD, with over 1,100 registered community members. Our wide-ranging support includes events, therapeutic activities, information resources and care and benefits advisor services, as well as work to influence research, health policy and service quality.

Your donation can help AGSD-UK deliver the priorities that people living with GSDs have identified for the next three years:

Support across the community

· Everyone affected will be connected to an active and supportive GSD community

Help with living well

· People with any GSD will be offered the information and activities they need to live well with the condition

Better treatments and service access

· The community will experience improved management, treatment options and service access

AGSD-UK is a small charity determined to achieve a big impact for people affected by this rare and often overlooked condition. Any contribution is hugely valued and makes a real difference for those individuals and families whose lives are affected.