UKTS

What UKTS does

UK Thalassaemia Society (UKTS) is a UK-registered charity (No. 275107) founded in 1976 to support individuals and families affected by thalassaemia, a group of genetic blood disorders requiring lifelong treatment. Headquartered at Southgate, London N14 6PH, the charity operates with a staff of 11–50 and serves a community of approximately 2,310 patients across the UK, working through a network of 71 NHS thalassaemia treatment centres and a regional ambassador programme. Its mission spans direct patient support, clinical-standard setting, advocacy, research funding, and awareness raising for thalassaemia carriers.

UKTS's product and service portfolio includes the quarterly "Thalassaemia Matters" medical magazine, the co-developed UK Clinical Standards for Thalassaemia (currently in its 4th Edition, 2023), patient information resources and counseling services, weekly fitness sessions, a monthly "Talking Thalassaemia" radio programme on 103.3 FM, scientific meetings, national patient conferences, and an online merchandise shop selling greeting cards. The charity also facilitates clinical-trial information access, including a current investigational treatment partnership with University College London Hospital for thalassaemia intermedia patients. International engagement is delivered through founding-membership status in the Thalassaemia International Federation (TIF) and active membership in EURORDIS, ENERCA, and iRDiSC.

The revenue model is a typical UK charity construct: voluntary donations and legacies (the primary stream), recurring Full membership subscriptions at £2 per month (Ordinary membership is free without voting rights), community fundraising (marathon runners, quiz nights, sponsored events, easyfundraising), and modest merchandise sales. UKTS also pursues advocacy income indirectly via coalition work — for example, through the Prescription Charges Coalition — and has invested over £2.5 million in life-saving thalassaemia research since founding. There is no disclosed revenue figure, and the organization is governed by a Board of Trustees with no parent company or external equity backing.

Name

UKTS

Legal name

UK Thalassaemia Society

Website

https://ukts.org

Company type

Private

Founded year

1976

Operating status

Operating

Headcount range

11–50 employees

Short description

UK Thalassaemia Society (UKTS) is the UK's only dedicated thalassaemia charity, founded in 1976, providing patient support, counselling, clinical standards, publications, and advocacy to roughly 2,310 patients across 71 NHS treatment centres.

Ownership category

akta.pro rank

Product category

Patient Advocacy and Rare Disease Charity Services

NAICS

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

SIC

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

akta.pro primary industry

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

Keywords

• Thalassaemia patient support
• Rare disease charity
• Patient advocacy services
• Clinical care standards
• Health information resources

Headquarters

HQ city

Southgate

HQ country

United Kingdom

HQ region

Europe

Offices2 records

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Others

Revenue model

1. Donations and Fundraising: UKTS is a registered charity reliant on donations and legacies from the community. Fundraising activities include marathon runners, birthday fundraisers, quiz nights, sponsored events, and general donations.
2. Membership Fees: Full membership at £2 per month provides voting rights at AGM; Ordinary membership is free without voting rights.
3. Merchandise Sales: The UKTS online shop sells greeting cards and merchandise. Mixed design packs of 10 cards cost £10; single cards are £1.50.

Pricing tiers

Distribution channels4 records

Marketing channels9 records

Core offering

UKTS is a UK-registered charity (No. 275107) that supports people affected by thalassaemia through membership programmes, counselling, patient information resources, clinical standards publications, advocacy with NHS/NICE/Government, a quarterly medical magazine, educational events and webinars, fitness sessions, and fundraising for life-saving research. It also operates a small retail shop selling greeting cards and merchandise.

Product overview

UKTS is a charity organization that serves as the UK's largest community for people living with, affected by, and treating thalassaemia. The organization provides a comprehensive suite of services including its flagship quarterly publication 'Thalassaemia Matters', clinical quality standards publications, patient support resources, fitness and wellbeing programmes, educational radio broadcasts, and an ambassador mentorship network. UKTS also operates a merchandise shop and facilitates access to clinical trials information. The organization focuses on advocacy, awareness raising, research funding, and direct patient support through counselling services and educational events.

Differentiator

Problem solved

Functional benefit

Brands

• Thalassaemia Matters: The charity's quarterly medical magazine providing health and lifestyle advice for patients and healthcare professionals.

Products and services

• UKTS Membership (Ordinary and Full)

Named customers4 records

Segments4 records

Ideal customer profiles3 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 flagship, core and minor.

• Thalassaemia International Federation (TIF)flagshipStrategic or Co-development PartnerUKTS is a founding member of the Thalassaemia International Federation and previously held seats on the Board of Directors. This partnership enables global advocacy and knowledge sharing in thalassaemia care and policy.
• EURORDIS (European Rare Diseases Organisation)coreStrategic or Co-development PartnerUKTS is an active member of EURORDIS, connecting with European rare disease networks to advance awareness and research into thalassaemia and share knowledge across international borders.
• European Network for Rare and Congenital Anaemias (ENERCA)coreStrategic or Co-development PartnerUKTS is an active member of ENERCA, contributing to and benefiting from European expertise on rare anaemias including thalassaemia.
• International Rare Diseases Search Consortium (iRDiSC)minorStrategic or Co-development PartnerUKTS is a member of iRDiSC, participating in international efforts to accelerate rare disease research and treatment development.
• NHS Sickle Cell and Thalassaemia Screening ProgrammecoreStrategic or Co-development PartnerUKTS has a long-running partnership with the NHS Sickle Cell and Thalassaemia Screening Programme and the Sickle Cell Society, focused on improving families' experience of antenatal and newborn screening.
• Prescription Charges CoalitioncoreStrategic or Co-development PartnerUKTS is an active member of the Prescription Charges Coalition — a group of 51 organisations calling on the Government to scrap prescription charges for people with long-term conditions in England.
• Sickle Cell SocietycoreStrategic or Co-development PartnerUKTS partners with the Sickle Cell Society on joint initiatives including the NHS screening programme partnership, improving families' experience of haemoglobin disorder screening.
• UK Forum of Haemoglobinopathies (HbOs)flagshipStrategic or Co-development PartnerUKTS is a founding Board Member of the Forum of Haemoglobinopathies, a multi-disciplinary group of health professionals involved in sickle cell disease, thalassaemia and related conditions. It formulates national policy and ensures consistency of care throughout the UK.
• National Institute for Health and Care Excellence (NICE)coreStrategic or Co-development PartnerUKTS is consulted by NICE as an expert knowledge provider on thalassaemia for evidence-based guidelines and recommendations for health and care in England.
• University College London Hospital (UCLH)coreStrategic or Co-development PartnerUCLH is the site of a new investigational injection-based treatment clinical trial for thalassaemia intermedia patients, led by Dr Maciej Garbowski (Principal Investigator) and Rafaela de Carvalho Machado (Research Nurse).
• Department for Work and Pensions (DWP)minorStrategic or Co-development PartnerUKTS has a working partnership with the DWP to develop training and teaching material for assessors of Personal Independence Payments (PIP) for social care and disability funding.
• UK Thalassaemia Society Patrons and TrusteescoreOthersUKTS is supported by notable patrons including Adil Ray OBE (creator of Citizen Khan), Peter Ekache (Olivier-nominated actor), Nina Wadia (actress), Tonia Buxton (TV presenter), and Kypros Kyprianou (Theo Paphitis Retail Group), who lend their profiles to raise awareness.

Scale indicators4 records

Recent moves6 records

Expansion highlights5 records

Broad incumbents

• Anthony Nolan: UK charity operating in blood-related healthcare (stem cell/bone marrow registry). Comparable peer addressing patients reliant on blood/stem cell interventions, with similar advocacy and NHS partnership dynamics.
• National Organization for Rare Disorders (NORD): US rare disease umbrella organisation providing advocacy, research, and patient support. Comparable international peer in rare disease patient organisation model where UKTS operates.
• Cancer Research UK: Largest UK disease-specific charity funding research and patient information. Establishes the model UKTS operates within at much smaller scale; relevant incumbent for fundraising comparison.
• Diabetes UK: Major UK disease-specific health charity providing patient support, research funding, and clinical standards. Same charity model applied at much larger scale to a different chronic condition.
• Haemophilia Society UK: UK national charity providing support, advocacy, and information for people with bleeding disorders. Comparable model of disease-specific patient support, clinical standards engagement, and NHS advocacy.

Direct peers

• Sickle Cell Society: UK-based charity supporting patients with sickle cell disease, a closely related haemoglobin disorder. UKTS has an active joint partnership with this society on the NHS Screening Programme, making it the most direct functional peer.
• Cooley's Anemia Foundation: US-based thalassaemia-specific charity funding research and patient services for the same disease. Closest international peer operating across identical patient population and mission.
• Thalassaemia International Federation (TIF): Global umbrella organisation for thalassaemia patient associations; UKTS is a founding member. TIF operates patient advocacy, education, and policy at international level for the same disease area.

Emerging players

• Genetic Alliance UK: UK umbrella charity for genetic and rare conditions. UKTS addresses genetic blood disorders, making this an adjacent peer in genetic counselling and rare disease patient advocacy.
• EURORDIS - Rare Diseases Europe: European federation of rare disease patient organisations. UKTS is an active member; EURORDIS is a larger collaborative peer in the rare disease advocacy space where UKTS plays.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat5 records

Key risks5 records

Key highlights7 records

Customer concentration

• Xx.com/teamukts
• YouTubeyoutube.com/c/UnitedKingdomThalassaemiaSociety
• Facebookfacebook.com/teamukts
• Instagraminstagram.com/ukts2025
• LinkedInlinkedin.com/company/ukts

Revenue estimate

Valuation estimate

Number of profiles

Profiles7 records

Funding overview

Funding rounds

Investors

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M&A

Investments

M&A and investment is available on the Subscription and Enterprise plan.Contact sales →

Frequently asked questions about UKTS