THE EHLERS-DANLOS SOCIETY

Registered charity 1180984 · accounts filings on the Charity Commission register

Working to provide learning conferences, collaborative research and education initiatives, awareness campaigns, advocacy, community-building, and care for EDS & HDS population. A community of individuals, caregivers, healthcare professionals, and supporters, dedicated to saving and improving the lives of those affected by EDS, HSD and related conditions.

Causes: Education/training · Disability · website · Get email alerts

Financial health, per its FY2025 accounts

The accounts state that the charity reported a net movement in funds of £143,285 for the year ended 30th April 2025, resulting in total reserves of £200,179. The trustees confirm that the charity holds sufficient reserves to support the going concern basis for at least 12 months and has no debts. However, the trustees explicitly note that they do not currently have a reserves policy but aim to create one in the future.

Automated summary of the FY2025 accounts; the evidenced findings below carry the verbatim passages.

What the accounts disclose

Accounts audited by Jeffrey Altman & Company. Discloses 3 of 6 completeness components.

Public fundraising profile: JustGiving — Ehlers-Danlos Society (matched by registered charity number).

Leadership, per the charity’s website

• Lara Bloom — President and CEO (source)
• Dr. Maggie Linn Bartlett, PhD — Chief Scientific Officer (source)
• Dr. Dacre Knight, MD, MS, FACP — Chief Medical Officer (source)
• Sinead Waugh — Chief Operations Officer (source)
• Eric Alley — Chief Financial Officer (source)
• Erin Simons — Chief Marketing Officer (source)

Listed on the charity’s own website when we last crawled it; roles may have changed. Pay-band disclosures above are anonymous statutory disclosures and are not attributed to any named individual.

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

Structured financials (annual return, FY ending 30/04/2025)

Reported reserves equal ~0.0 months of spending — in the bottom quarter for charities its size (median 4.8 months; benchmarks).

Per its annual return, largest income source: Donations and legacies (100% 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: 0.0% of total income — below the median for charities its size (5.2%) (benchmarks).

Register events

• Received assets from another charity (30/09/2019) — per the register’s event history; asset transfers typically record mergers or reorganisations.

Trustees · trustee networks

• Susan Hawkinschair
• Aisling Green
• Anoushe Husain
• Colin O'Donnell
• Dr Akilah Cadet
• Dr Melanie Jane MacLeod
• Dr Woodrow Gandy
• Frances Anne Fitzgerald
• John B Zonarich
• Robert Rubin
• Sue Haskel

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.

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 THE EHLERS-DANLOS SUPPORT UK.

• THE EHLERS-DANLOS SUPPORT UK income £435k
• ECTODERMAL DYSPLASIA SOCIETY income £107k
• HBDCA income £162k
• THE HAEMOPHILIA SOCIETY income £590k
• EUROPEAN SOCIETY FOR PAEDIATRIC ENDOCRINOLOGY income £1.4m
• DOWNRIGHT EXCELLENT income £224k

Side by side with its peers

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