Pompe Support Network

The Pompe Support Network is a UK-based community organization established to support individuals and families affected by Pompe disease. It is registered as a charity with the number 1186383.

Purpose and Activities

The network is driven by a community of individuals, families, scientists, and healthcare professionals. Its primary goal is to improve the lives of those living with Pompe disease by providing support, sharing advice, and facilitating community engagement.

Key Initiatives

• Research Influence: Members of the Pompe Support Network work to influence research towards safe, effective, and affordable therapies for Pompe disease.
• Advocacy: The organization advocates for access to therapies and medical devices, ensuring that individuals with Pompe disease receive the necessary care.
• Community Support: The network facilitates and finances community sub-groups that foster shared experiences and manage projects aimed at enhancing the physical and mental wellbeing of the Pompe community. Membership is free, offering various opportunities for community involvement.

Structure and Governance

The Pompe Support Network operates on a membership basis, which is free and open to anyone interested in supporting the Pompe community. It is managed by members of the community for the benefit of those affected by Pompe disease. This structure ensures that the organization's initiatives are centered around the needs and experiences of its members.

[1] https://pompe.uk [2] https://pompe.uk/support-and-advice [3] https://register-of-charities.charitycommission.gov.uk/en/charity-search/-/charity-details/5146912 [4] https://rarediseases.org/organizations/pompe-support-network/ [5] https://www.lsdcollaborative.org.uk/?portfolio=pompe-support-network