About Pompe Support Network
We support families and individuals living with Pompe Disease, a rare neuromuscular condition.
On Rare disease Day we will be showing a film that tells the story of 2-year old Arla, who was diagnosed with Infantile Pompe Disease in March 2020. The compelling and touching story, told by Arla’s parents, tells of the journey of a family dealing with Arla’s diagnosis during lockdown, and through to their struggle to maintain Arla’s treatment.