# POMPE SUPPORT NETWORK

## Details

- **Country:** England &amp; Wales
- **Charity number:** 1186383
- **Other names:** PSN
- **Status:** Registered
- **Legal form:** CIO
- **Registered:** Nov. 15, 2019
- **Register:** https://register-of-charities.charitycommission.gov.uk/en/charity-search/?p_p_id=uk_gov_ccew_onereg_charitydetails_web_portlet_CharityDetailsPortlet&amp;p_p_lifecycle=0&amp;p_p_state=maximized&amp;p_p_mode=view&amp;_uk_gov_ccew_onereg_charitydetails_web_portlet_CharityDetailsPortlet_regId=1186383


## Contact

- **Address:** 43A NORTH LANE, BURITON, PETERSFIELD
- **Postcode:** GU31 5RS
- **Phone:** 01730 231554
- **Email:** hello@pompe.uk
- **Website:** www.pompe.uk



## Activities

**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 &amp; 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

**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




## 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



## Geography

- Northern Ireland
- Scotland
- Throughout England And Wales





## Trustees

| Name | Role | Appointed |
|---|---|---|
| **Allan David John Muir** | Chair | Dec. 20, 2019 |
| Barbara Jane Muir |  | Dec. 20, 2019 |
| Dr Kevin John O&#x27;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 |




