Sanofi have provided the following information on the supply issues affecting their Pompe therapies.
Please remember our AGSD-UK advisors are here to listen and provide support for those affected by this uncertainty. Just contact info@agsd.org.uk
To help raise awareness Emmie has been talking about daughter Arla and the family’s experience on infant onset Pompe. You can find out more here.
Find out more about what a typical day might look like for community members affected by Pompe and what they find most helpful.
Spark have provided the following community update on their Pompe gene therapy programme.
Find out about new Pompe information resources