OpenCharities

Pompe Support Network

Psn

Country
England & Wales
Charity number
1186383
Status
Registered
Registered
Nov. 15, 2019
Legal form
CIO

Address

Address
43A NORTH LANE
BURITON
PETERSFIELD
GU31 5RS

Contact

Activities

The Pompe Support Network is an organisation developed by the UK Pompe community in order to support others within the community. Together we: - Provide peer to peer support - Support research into medical and supportive care. - Provide information about promising medical developments. - Advocate for access to medical therapies or devices. - Share life experiences

Objects: To Relieve Sickness Of Children And Adults Suffering From Pompe Disease In The United Kingdom And Throughout The World, In Particular But Not Exclusively By: (A) Contributing To The Advancement Of Quality Research & Education In Respect Of Pompe Disease; And (B) Providing Information, Advice And Support To Such Individuals, Their Families And Carers By Such Means As The Trustees May Determine 2. To Relieve The Needs Of Bereaved Families Who Have Lost Family Members To Pompe Disease In The United Kingdom By Such Means As The Trustees May Determine

Classification

How
Makes Grants To Individuals, Makes Grants To Organisations, Provides Services, Provides Advocacy/advice/information, Sponsors Or Undertakes Research
What
The Advancement Of Health Or Saving Of Lives, Disability
Who
Children/young People, Elderly/old People, People With Disabilities

Areas of operation

Country
Northern Ireland, Scotland
Region
Throughout England And Wales

Finances

Period end Income Expenditure
March 31, 2025 £93,540 £68,326
March 31, 2024 £71,896 £61,256
March 31, 2023 £92,276 £74,506
March 31, 2022 £79,526 £118,709
March 31, 2021 £93,292 £45,332

Trustees

Name Appointed
Allan David John Muir (Chair) Dec. 20, 2019
Barbara Jane Muir Dec. 20, 2019
Dr Kevin John O'Donnell Dec. 20, 2019
Kevin William Annesley Jan. 25, 2020
Luke David Fraser May 1, 2025
Malcolm Knightley April 29, 2023
Wayne Belfitt Oct. 15, 2022