THE ALKAPTONURIA SOCIETY LTD

Registered charity 1101052 · accounts filings on the Charity Commission register · Wikidata: Q30286642 · also known as THE AKU SOCIETY

The Alkaptonuria Society is a patient group organisation which helps and supports people with Alkaptonuria a rare genetic disease. It helps people who suffer from Alkaptonuria and we receive worldwide enquiries. We are involved in research with the University of Liverpool to find a cure for Alkaptonuria.

Objects

I) TO ADVANCE THE EDUCATION OF THE PUBLIC INTO ALL MATTERS RELATING TO ALKAPTONURIA DISEASE AND ITS CAUSES, EFFECTS AND TREATMENTS PARTICULARLY BY THE PROVISION AND MAINTENANCE OF AN INTERNET WEBSITE. II) TO RELIEVE THE SUFFERING OF PERSONS SUFFERING FROM THE DISEASE BY THE PROVISION OF INFORMATION AND ADVICE III) THE PROMOTION AND RESEARCH INTO THE CAUSES, EFFECTS, TREATMENT AND MANAGEMENT OF ALKAPTONURIA DISEASE AND DISSEMINATE THE USEFUL RESULTS THEREOF

Area of benefit: NOT DEFINED

The charity’s charitable objects and area of benefit, quoted from its governing document as held on the Charity Commission register.

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

Registered contact address: Cambridge, East of England, England (from the postcode on the register)

Financial health, per its FY2025 accounts

The accounts state that total funds increased to £1,027,979, with unrestricted reserves at £352,388, which is above the stated policy target of 12 months of contractual obligations. The charity reported a net surplus of £72,797 for the year, funded primarily by restricted grants, and holds significant reserves to support multi-year research projects.

Automated summary of the FY2025 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.

Policies the charity declares

In its annual return the charity told the Commission that it has the policies listed below. This is self-declared: it is not verified by the Commission or by this site, and it is not evidence of how a policy works in practice.

• Bullying and harassment policy and procedures
• Complaints handling
• Conflicting interests
• Engaging external speakers at charity events policy and procedures
• Financial reserves policy and procedures
• Internal charity financial controls policy and procedures
• Internal risk management policy and procedures
• Investing charity funds policy and procedures
• Investment
• Paying staff
• Risk management
• Safeguarding policy and procedures
• Safeguarding vulnerable beneficiaries
• Serious incident reporting policy and procedures
• Social media policy and procedures
• Trustee conflicts of interest policy and procedures
• Trustee expenses policy and procedures
• Volunteer management

From the charity’s annual return (Part A, self-declared)

Answers and figures the charity gave in Part A of its annual return to the Charity Commission. They are self-declared: not verified by the Commission or by this site. Only positive answers and figures are listed; items not listed are simply not shown.

Source: this charity’s annual returns on the Charity Commission register.

Public fundraising profile: JustGiving — The Alkaptonuria Society (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 Funding for our Body to Mind Programme & our 2021 International Patient Workshop” (source page)
• Seventh Framework Programme — “Seventh Framework Programme DevelopAKUre project. Our clinical trial into the drug nitisinone.” (source page)
• The Royal Liverpool & Broadgreen Hospitals — “The Royal Liverpool & Broadgreen Hospitals Patient support before, during and after NAC clinics” (source page)
• Society Of Inborn Errors Of Metabolism — “Society Of Inborn Errors Of Metabolism International Patient Workshop 2021” (source page)
• Cambridgeshire Coronavirus Community Fund — “Cambridgeshire Coronavirus Community Fund Body to Mind counselling & Covid support” (source page)
• European Joint Programme of Rare Diseases — “European Joint Programme of Rare Diseases 2021 International AKU Scientific Conference” (source page)
• Cycle Pharmaceuticals — “Cycle Pharmaceuticals 2021 International Patient Workshop” (source page)
• The Sylvia Adams Charitable Trust — “The Sylvia Adams Charitable Trust Breaking Down Barriers Project. Overcoming barriers to information.” (source page)
• Genetic Disorders UK — “Genetic Disorders UK General funds” (source page)
• Rosetrees Medical Research Trust — “Rosetrees Medical Research Trust 2021 International Patient Workshop” (source page)
• Genetic Disorders UK – Jeans For Genes Day — “Genetic Disorders UK – Jeans For Genes Day Supporting our SOFIA-Paediatric study into when AKU starts in children.” (source page)
• The Hospital Saturday Fund — “The Hospital Saturday Fund Supporting our SOFIA-Paediatric study into when AKU starts in children.” (source page)
• Vitaflo Innovation in Nutrition — “Vitaflo Innovation in Nutrition Supporting our patients to follow a protein-controlled diet” (source page)
• SOBI Innovation Treatment Access — “SOBI Innovation Treatment Access International AKU Patient Workshop & AKU Childrens Book” (source page)
• The Music Sales Charitable Trust — “The Music Sales Charitable Trust Funding towards the SOFIA paediatric stud” (source page)

Public profiles (found on the charity’s own website): facebook · instagram

Structured financials (annual return, FY ending 30/06/2022)

Reported reserves equal ~8.6 months of spending — above the median for charities its size (median 7.2 months; benchmarks).

Per its annual return, largest income source: Donations and legacies (52% of income) — components as reported reconcile to the return’s total income; not from the accounts narrative.

Per its annual return, cost of raising funds: 0.1% of total income — below the median for charities its size (3.2%) (benchmarks).

Trustees · trustee networks

• Dr DUNCAN BATTYchair · trustee of 1 other charity
• Dr LAKSHMINARAYON RAO RANGANATH
• Dr NICOLAS SIREAU · trustee of 1 other charity
• Jessica Barnes
• PROFESSOR JAMES GALLAGHER
• Prof George Bou-Gharios
• Professor ALAN SHENKIN · trustee of 1 other charity
• WILLIAM ANTHONY ESMOND

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

Operates in: Throughout England And Wales

Income and spending

Common questions

Known funders

Grants to this charity found in funders’ own accounts filings.

Government & lottery funding

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

Funders of similar charities

Funders whose accounts show grants to charities similar to this one (and no recorded grant to this charity) — a starting list for fundraisers.

Charities like this

Semantically similar by activities and financial character, from our analysed corpus. Compare with ALPORT UK.

• ALPORT UK income £179k
• HUNTINGTONS DISEASE ASSOCIATION income £3.2m
• THE ATAXIA-TELANGIECTASIA SOCIETY income £1.1m
• THE NATIONAL SOCIETY FOR PHENYLKETONURIA (UNITED KINGDOM) LIMITED income £160k
• THE ALDINGBOURNE TRUST income £9.4m
• ALOPECIA UK income £282k

Side by side with its peers

Each row is that charity’s latest analysed filing; every value is quote-backed on its own page.