THE BRITISH PORPHYRIA ASSOCIATION

Registered charity 1089609 · accounts filings on the Charity Commission register

Support for people with porphryia and their relatives. Improve understanding of porphryia. Support research into porphryia.

Causes: Education/training · The Advancement Of Health Or Saving Of Lives · website · Get email alerts

Financial health, per its FY2026 accounts

The accounts state that total funds increased to £178,687, with unrestricted reserves at £159,895, reflecting a net income of £111,360 for the year. The trustees report that the charity's reserves policy is to hold sufficient funds for working capital and unexpected expenditure, noting that income from grants and donations has provided headroom for organisational growth. The independent examiner confirmed that accounting records were kept and the financial statements accord with those records.

Automated summary of the FY2026 accounts; the evidenced findings below carry the verbatim passages.

What the accounts disclose

Accounts independently examined (not a full audit). Discloses 5 of 6 completeness components.

Public fundraising profile: JustGiving — The British Porphyria Association (matched by registered charity number).

Funders the charity credits

Named as funders/supporters on the charity’s own website (the charity’s claim, distinct from accounts-verified grants).

• The National Lottery Community Fund — “The National Lottery Community Fund has helped to make a huge difference to our porphyria community. We’re one of thousands of projects fund…” (source page)
• Disc Medicine — “Disc Medicine have chosen to support the British Porphyria Association through a variety of ways. Most recently they provided a grant to sup…” (source page)
• Tanabe Pharma America — “Tanabe Pharma America have been active supporters of the British Porphyria Association in recent years. Most recently providing a grant to s…” (source page)
• Alnylam Pharmaceuticals — “Alnylam Pharmaceuticals have supported the BPA in numerous ways. Alnylam provided a grant to update our website and make it more mobile frie…” (source page)
• Advocacy for Impact Grants — “Advocacy for Impact Grants is a Global Competitive Grants Program set up by Alnylam Pharmaceuticals. The BPA were delighted to be one of the…” (source page)
• Clinuvel Pharmaceuticals Ltd — “Clinuvel Pharmaceuticals Ltd have supported the British Porphyria Association over recent years with numerous grants.” (source page)
• Alpkit Foundation — “Alpkit Foundation contributed £500 to a two-day activity package for three EPP patients for the Connect Alfresco event.” (source page)
• Recordati Rare Diseases — “Recordati Rare Diseases (previously known as Orphan Europe) has been one of our longest standing supporters. For numerous years they’ve spon…” (source page)
• Portal Therapeutics — “In 2025, they have chosen to support the British Porphyria Association in a variety of ways, including a grant for a patient conference in c…” (source page)
• Jeans for Genes — “In 2026, we were awarded an unrestricted grant of £5000 towards our mission of supporting families affected by porphyria across the UK.” (source page)
• The Tudor Trust — “The Tudor Trust makes grants to smaller community-led groups that support people at the margins of society. In 2021, they provided the BPA w…” (source page)

Register events

• Received assets from another charity (17/02/2017) — per the register’s event history; asset transfers typically record mergers or reorganisations.

Trustees · trustee networks

• Dr Victoria Anne McGuirechair
• ANNE NEWTON
• Claire Jarvis
• JOHN WALTER CHAMBERLAYNE MA · trustee of 1 other charity
• KAREN ELIZABETH HARRIS
• Natassja Chadwick
• Victoria Harrold

Trustee list from the Charity Commission register (current, not historical).

Operates in: Northern Ireland · Scotland · Throughout England And Wales

Income and spending

Common questions

Government & lottery funding

Grants to this charity published as open data by government and lottery funders (360Giving).