The Aplastic Anaemia Trust

What The Aplastic Anaemia Trust does

The Aplastic Anaemia Trust is a UK-registered charity (No. 1107539 in England & Wales, SC049810 in Scotland) founded in 1984 by Ted Gordon-Smith to improve outcomes for people affected by aplastic anaemia and related rare bone marrow failure conditions, including PNH, Fanconi anaemia, Dyskeratosis Congenita, Shwachman Diamond Syndrome, and Diamond Blackfan Anaemia Syndrome. The organisation provides direct patient and family support through a helpline, one-to-one emotional wellbeing sessions with a clinical psychologist, group courses (mindfulness, stress management), community events (Coffee Cake and Chat, walks, half marathons, Santa Splash), webinars, and printed information materials, alongside the MarrowKidz microsite for children and young people and the Rare Voices podcast. It funds and shapes research, notably co-funding the world-first TIARA cell therapy clinical trial at King's College Hospital with LifeArc, and convenes a Research and Clinical Advisory Panel of senior haematologists to set clinical care and research priorities.

The Trust operates a non-commercial model: all patient-facing services are free, and income is generated through individual donations, community fundraising events, merchandise sales, conference sponsorship from pharmaceutical companies (including Alexion AstraZeneca, Pfizer, Roche, and Sobi for the 2024 research conference), named research funds, and co-funded research grants. Underlying technology is intentionally lightweight — a website platform and the ThankQ CRM by Access Group — with no proprietary technology product; the primary 'technology' of the Trust is its human clinical expertise, its 40-year content library, and its patient community, which together serve an estimated 39% of newly diagnosed UK patients each year. The organisation is led by CEO Joe Kirwin and Deputy CEO Ellie Dawes, is governed by a Board of Trustees, and is currently running an active 'Access to Eltrombopag' advocacy campaign alongside expansion of its wellbeing services and a recently launched patient registration system.

Name

The Aplastic Anaemia Trust

Legal name

The Aplastic Anaemia Trust

Website

https://theaat.org.uk

Company type

Private

Founded year

1984

Operating status

Operating

Headcount range

11–50 employees

Short description

The Aplastic Anaemia Trust is the only UK charity dedicated to aplastic anaemia and related rare bone marrow failure conditions, providing free patient support, emotional wellbeing services, information resources, community events, and research funding to patients, families, and clinicians across the United Kingdom.

Ownership category

akta.pro rank

Product category

Patient Advocacy and Rare Disease Support Services

NAICS

Individual and Family Services (6241), Voluntary Health Organizations (813212)

SIC

Services-Social Services (8300), Services-Misc Health & Allied Services, Nec (8090)

akta.pro primary industry

Rare Disease & Special Needs Support Organizations (BPAGACAM)

akta.pro secondary industry

Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)

Keywords

• Rare disease charity
• Patient support services
• Bone marrow failure support
• Emotional wellbeing support
• Medical research funding

Headquarters

HQ city

Birmingham

HQ country

United Kingdom

HQ region

Europe

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Technology or R&D, Marketing or Sales

Revenue model

1. Donations and Fundraising: The charity receives donations from individuals, families, and supporters. They organize fundraising events including walks, half marathons, Santa Splash events, and corporate donations.
2. Conference Sponsorship: Pharmaceutical companies including Alexion AstraZeneca, Pfizer, Roche, and Sobi sponsored their 2024 research conference. Sponsorship revenue supports research and operational activities.
3. Merchandise Sales: The charity operates an online shop selling branded merchandise including items purchased through their e-commerce platform.
4. Shop Sales: Sale of printed leaflets, booklets, and information materials for children and adults affected by aplastic anaemia.

Pricing tiers

Go-to-market motion3 records

Distribution channels4 records

Marketing channels9 records

Core offering

The Aplastic Anaemia Trust provides free patient support services, information resources, and emotional wellbeing programs for individuals affected by aplastic anaemia and related rare bone marrow failure conditions. The charity also funds medical research, including the world-first TIARA clinical trial, and conducts advocacy campaigns for treatment access. Core offerings include a support helpline, the MarrowKidz children's microsite, online courses, podcasts, printed materials, and community events across the UK.

Product overview

The Aplastic Anaemia Trust offers a portfolio of support services and information resources for people affected by aplastic anaemia and related rare bone marrow failure conditions. The core offerings include: a helpline for direct support; MarrowKidz (a dedicated children's microsite); Emotional Wellbeing Support (one-to-one sessions, online courses, and group events); the Rare Voices podcast; patient stories blog; an A-Z medical jargon buster; and printed information materials. The charity focuses on patient support, education, and community connection rather than a technology product.

Differentiator

Problem solved

Functional benefit

Brands

• MarrowKidz: A dedicated microsite providing resources and guides specifically designed for children and young people who have aplastic anaemia, or who are supporting a family member with the condition.

Products and services

• Emotional Wellbeing Support Free emotional and psychological support services for people with rare bone marrow failure conditions, including one-to-one support, online courses, monthly group sessions with a Clinical Psychologist, and in-person Coffee Cake and Chat events at treatment locations.
• MarrowKidz
• Rare Voices Podcast
• Helpline Support
• Patient Registration Registration service for people living with aplastic anaemia or related conditions (PNH, Fanconi anaemia, Dyskeratosis Congenita, Shwachman Diamond Syndrome) to connect with the charity and receive support.
• Online Courses
• Support Events
• Printed Information Materials
• Patient Stories (AA Voices)
• A-Z Jargon Buster

Quantifiable outcome

• 39% of newly diagnosed patients in the UK have been in direct contact with the trust
• +2 more outcomes

Named customers8 records

Segments4 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Twelve partnerships are on record, tiered minor and core.

• London Wildlife TrustminorStrategic or Co-development PartnerPartnership to organize accessible outdoor community events for people affected by aplastic anaemia. They co-hosted the London Wildlife Walk at Walthamstow Wetlands, providing nature experiences and peer connection opportunities.
• Clinical Psychologist (Lesley)coreOthersExpert Clinical Psychologist specializing in supporting people managing complex physical health conditions. Works with the support team to provide appropriate levels of emotional wellbeing support to patients.
• Sami FitzminorStrategic or Co-development PartnerCreated a relaxing Sound Bath recording to help members of the community unwind after difficult days.
• Becky (Present Moment Meditation)minorStrategic or Co-development PartnerProduced a starry night meditation recording to aid sleep for members of the aplastic anaemia community.
• Bethan EcclestoneminorStrategic or Co-development PartnerQualified yoga practitioner who created a yoga session designed for the aplastic anaemia community, suitable for varying mobility levels.
• Caroline LovettminorStrategic or Co-development PartnerPsychosexual and relationship therapist who worked with the trust to create articles and videos about sex and relationships for people living with rare bone marrow failure conditions.
• Clarise PattisonminorStrategic or Co-development PartnerMindfulness practitioner leading eight-week series of group sessions offering mindfulness-based approaches to managing stress related to the condition.
• Research and Clinical Advisory Panel (RCAP)coreStrategic or Co-development PartnerExpert panel including Professor Ghulam Mufti OBE, Professor Rod Skinner, Professor Alan Warren, Dr Austin Kulasekararaj, Dr Bethany Mitchell, Callum Tempest, Dr David Irvine, Professor John Snowden, Professor Josu de la Fuente, Dr Keith Wilson, Dr Morag Griffin, Dr Sanjay Tewari, and Dr Sujith Samarasinghe providing clinical and research guidance.
• Maggie's CentreminorStrategic or Co-development PartnerCancer support center that provides resources and support spaces near hospitals, mentioned in patient stories as part of the care ecosystem.
• NHSminorStrategic or Co-development PartnerPartnership to add aplastic anaemia content to NHS Inform, the NHS website for Scotland, providing authoritative health information to patients.
• King's College Hospital and King's College LondoncoreStrategic or Co-development PartnerLeading research institutions conducting the TIARA clinical trial, a world-first cell therapy treatment for aplastic anaemia, funded by The Aplastic Anaemia Trust and LifeArc.
• MyIntent (Bequeathed)minorImplementation/ SI/ Consulting PartnerTrusted partner providing a free Will writing service for supporters of The Aplastic Anaemia Trust.

Scale indicators4 records

Recent moves6 records

Expansion highlights6 records

Broad incumbents

• Blood Cancer UK: Major UK blood cancer charity with a research-funding and patient-support mandate. Comparable in mission and UK footprint but operates at a much broader disease scope than aplastic anaemia specifically.
• Genetic Alliance UK: UK umbrella alliance for over 200 rare disease patient organizations. Comparable as a coordinating body for rare disease advocacy and policy engagement, including conditions the trust covers.
• Macmillan Cancer Support: Large UK charity providing information, emotional support, and financial guidance to people affected by cancer, including those undergoing bone marrow transplant. Comparable support-services infrastructure at much larger scale.
• Rare Disease UK: UK national campaign for rare diseases run by Genetic Alliance UK. Comparable in patient advocacy and policy focus for the rare disease community that includes aplastic anaemia patients.
• DKMS: International blood stem cell donor registry active in the UK, with overlap in bone marrow failure and transplant patient pathways. Comparable as a major registry and patient support actor in the same disease space.

Others

• LifeArc: UK medical research charity that co-funds the TIARA clinical trial with The Aplastic Anaemia Trust. Not a competitor but a directly adjacent research-funding partner and ecosystem peer in rare disease translation.

Direct peers

• Anthony Nolan: UK charity focused on stem cell and bone marrow transplantation, including aplastic anaemia. Highly comparable as a UK-based rare bone marrow failure support and patient recruitment organization.
• MDS UK Patient Support Group: UK charity supporting patients with Myelodysplastic Syndromes, an adjacent bone marrow failure condition. Directly comparable support-services and patient-advocacy model for UK rare blood disorder patients.
• PNH Support: UK-specific charity for Paroxysmal Nocturnal Haemoglobinuria (PNH), one of the related conditions served by The Aplastic Anaemia Trust. Directly comparable patient advocacy and support model.
• Fanconi Hope: UK charity dedicated to Fanconi Anaemia — one of the rare inherited bone marrow failure conditions covered by the trust. Direct niche peer serving the same patient subset.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks5 records

Key highlights7 records

Customer concentration

• Xx.com/AplasticAnaemia
• Facebookfacebook.com/aplasticanaemiatrust
• Instagraminstagram.com/aplasticanaemiatrust
• LinkedInlinkedin.com/company/the-aplastic-anaemia-trust-charity

Revenue estimate

Valuation estimate

Number of profiles

Profiles4 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about The Aplastic Anaemia Trust