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Countdown to Rare Disease Day 2020: 1

Speak out about your experiences

Rare Disease Day aims to bring a spotlight on rare conditions. Would you like to offer a talk about your experiences living with a GSD? The more people who speak out to relevant medical teams the greater the chance of diagnosis and understanding for everyone with a GSD in the UK.

Your experience is invaluable

At AGSD-UK we believe that the patient experience is invaluable. You can speak about your long journey to diagnosis, difficulties in accessing good medical care or about your daily life. People with experience can say so much more and have a huge impact on raising awareness.

Contact us

We can help locate a local team of medics and we will pay your travelling expenses too.