Sickle Cell Society

What Sickle Cell Society does

The Sickle Cell Society is the UK's only national charity dedicated to sickle cell disorder, founded in 1979 and registered as a charity and company limited by guarantee in England and Wales (Registered Charity Number 1046631; Company Number 2840865). It serves an estimated 19,000 people living with sickle cell in the UK, alongside their families, caregivers, healthcare professionals, and Black heritage supporters. The Society operates from a London headquarters at 54 Station Road, NW10 4UA, with approximately 14 paid staff (5 full-time, 9 part-time), around 30 active volunteers, and a board of 10 elected trustees.

Its core product set is a portfolio of non-clinical services rather than a technology platform. The Helpline Service delivers confidential phone and email support Mon–Fri 9am–5pm. The Children & Young Persons' Peer Mentoring Programme provides one-to-one mentoring for ages 10–24 in London, Liverpool, Manchester, and Sheffield. The annual Sickle Cell Family Retreat delivers residential respite, education, and peer connection. Complementary programmes include the Screening and Testing collaboration with NHS and the UK Thalassaemia Society, the Give Blood, Spread Love campaign with NHS Blood and Transplant, an Advocacy Link service for north central London and East Anglia, a podcast series, a clinical Resources Library, the Prison Estate Training & Development Programme with NHS England, and the RHO Transitions Project with NHS RHO.

The Society is funded primarily through voluntary donations, individual and corporate fundraising, challenge events, Gift Aid, and project grants from funders including Terumo BCT and the Peter Sowerby Foundation. Membership is free and open to anyone aged 18+. Strategic positioning is reinforced by the 2018 GSK Impact Award (with The King's Fund), NHS Information Standard certification, Investors in People accreditation, Cyber Essentials certification, and Fundraising Regulator membership; high-profile patrons include Sir Lenny Henry, Floella Benjamin, and Sir Clive Lloyd. A Three-Year Strategy for 2026–2029 targets nationwide service expansion, research advancement, ecosystem strengthening, and resourcing growth.

Name

Sickle Cell Society

Legal name

Sickle Cell Society

Website

https://sicklecellsociety.org

Company type

Private

Founded year

1979

Operating status

Operating

Headcount range

501–1,000 employees

Short description

The Sickle Cell Society is the UK's only national charity dedicated to sickle cell disorder, founded in 1979. It serves an estimated 19,000 UK patients, families, caregivers, and healthcare professionals through helpline, peer mentoring, family retreats, screening advocacy, blood donor recruitment, and policy campaigns, funded by donations and grants.

Ownership category

akta.pro rank

Product category

Patient Advocacy and Disease-Specific Charity Services

NAICS

Voluntary Health Organizations (813212), Other Individual and Family Services (624190)

SIC

Services-Social Services (8300), Services-Health Services (8000)

akta.pro primary industry

Blood, Organ & Tissue Donation Organizations (BPAGACAJ)

Keywords

• Sickle cell charity services
• Patient helpline support
• Peer mentoring programme
• Health screening awareness
• Blood donation campaign

Headquarters

HQ city

London

HQ country

United Kingdom

HQ region

Europe

Offices2 records

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Infrastructure, Others

Revenue model

1. Donations and fundraising: Individual donations, corporate fundraising, challenge events (e.g., Ultra Challenge), community fundraising, and Gift Aid. The charity relies on public donations to fund core services including the helpline, mentoring, family retreats, and campaigns.
2. Membership: Free membership open to anyone aged 18+ (people living with sickle cell, families, carers, healthcare professionals, and supporters). Members receive updates, AGM voting rights, event invitations, and opportunities to contribute to consultations and research.

Pricing tiers

Go-to-market motion1 record

Distribution channels6 records

Marketing channels7 records

Core offering

The Sickle Cell Society is the UK's only national charity dedicated exclusively to sickle cell disorder, providing free direct support services including a national helpline, peer mentoring for young people aged 10–24, an annual family retreat, screening programme partnership with NHS, an advocacy link service, and a blood donation recruitment campaign (Give Blood, Spread Love). It also produces educational resources, clinical standards of care, and policy campaign reports while serving as the national voice for the sickle cell community in engagement with NHS, parliament, and healthcare professionals.

Product overview

The Sickle Cell Society is a UK-based national charity providing a portfolio of patient-facing information, support, and community services for people affected by sickle cell disorder. Its core product suite is not a software platform but a set of distinct service programmes, anchored by a telephone/email Helpline Service, a Children & Young Persons' Peer Mentoring Programme, and a Sickle Cell Family Retreat. These are supplemented by the Screening and Testing Programme (a joint initiative with the NHS), the Give Blood, Spread Love blood donation campaign, an Advocacy Link service for north central London and East Anglia, The Sickle Cell Society Podcast, a Resources Library of clinical publications, a Children's Activities programme, and a Prison Estate Training & Development Programme. The Society also publishes a Three-Year Strategy (2026–2029) and maintains the RHO Transitions Project Blog documenting a collaboration with NHS on transition-to-adult-care support. Services are free to users and funded through donations, membership, and partnerships.

Differentiator

Problem solved

Functional benefit

Brands

• Give Blood, Spread Love: The Sickle Cell Society's blood donation project working with black-heritage communities to raise awareness of the need for ethnically matched blood to treat people with sickle cell, increase confidence in giving blood, and recruit new donors to the blood donation register.

Products and services

• Helpline Service A confidential telephone and email helpline providing emotional support, sickle cell information, help finding local resources, and advocacy for NHS, employment, housing, education, and benefits concerns. Operated Mon–Fri 9am–5pm by trained support staff for people affected by sickle cell disorder.
• Children & Young Persons' Peer Mentoring Programme A peer mentoring programme for young people aged 10–24 living with sickle cell disorder in London, Liverpool, Manchester, and Sheffield. Trained mentors with lived experience of sickle cell provide one-to-one support over up to 6 months to help mentees manage their condition, build resilience, and transition from paediatric to adult care.
• Sickle Cell Family Retreat An annual residential weekend retreat for families affected by sickle cell, combining adventure activities, creative sessions, sickle cell education, mental wellbeing support, and peer connection. Next scheduled for Friday 31st July – Sunday 2nd August 2026.
• Screening and Testing Programme A collaborative project between the Sickle Cell Society, UK Thalassaemia Society, and the NHS Sickle Cell and Thalassaemia Screening Programme, supporting antenatal, newborn, and preconception screening for sickle cell and thalassaemia, and providing educational resources for healthcare professionals and carriers.
• Give Blood, Spread Love Campaign A blood donation awareness and recruitment campaign working with NHS Blood and Transplant to encourage Black-heritage donors to register and give blood. Includes community outreach, a social media community called the 'Give Blood Squad', trained community advocates, and a network of social media channels.
• Advocacy Link Service An advocacy service supporting people living with sickle cell across north central London and East Anglia to navigate complex healthcare and social systems, address barriers to care, and ensure their voices are heard.
• The Sickle Cell Society Podcast A podcast series featuring guests with lived experience, healthcare professionals, and collaborators, exploring topics related to navigating sickle cell care, raising awareness, and championing change. Available on YouTube, Spotify, and Apple Podcasts.
• Resources Library A digital library of reports, leaflets, guides, and publications about sickle cell disorder, including the Top Ten Research Priorities and Standards for Clinical Care documents.
• Prison Estate Training & Development Programme A specialist training programme developed in partnership with NHS England and prison services for healthcare teams and staff across London prisons, aimed at improving awareness of sickle cell, supporting earlier identification of healthcare needs, and ensuring timely, appropriate care for people with sickle cell in custody.
• Children's Activities Activities and support services designed for children living with sickle cell and their caregivers.

Quantifiable outcome

• Mortality in childhood sickle cell disorder has fallen from 10% in the 1980s to <1% now, attributable to newborn screening, early care registration, and penicillin prophylaxis.
• +4 more outcomes

Named customers4 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

Seven partnerships are on record, tiered core and minor.

• NHS Blood and TransplantcoreStrategic or Co-development PartnerFormal partnership through the 'Give Blood, Spread Love, England' campaign. The Sickle Cell Society works alongside NHS Blood and Transplant to raise awareness of the need for more Black heritage blood donors, recruit new donors to the register, and address cultural barriers to donation. NHS Blood and Transplant organises blood donations across England.
• NHS EnglandcoreStrategic or Co-development PartnerPartnership with NHS England and prison services to develop specialist training and resources for prison healthcare teams across London prisons. The programme aims to improve sickle cell awareness, support earlier identification of healthcare needs, and ensure timely, appropriate care for people in custody.
• Anthony NolanminorStrategic or Co-development PartnerCollaboration with Anthony Nolan to develop sickle cell and stem cell transplant information resources. The Sickle Cell Society provided insight and feedback to ensure clearer, more accessible information for people with sickle cell about stem cell transplants.
• NHS Sickle Cell and Thalassaemia Screening ProgrammecoreStrategic or Co-development PartnerThe Sickle Cell Society partnered with the NHS SCT Screening Programme to raise awareness of screening and testing, supporting people to make informed choices about health and family planning. The Society is also part of a collaborative project with the UK Thalassaemia Society and NHS SCT Screening Programme.
• UK Thalassaemia SocietyminorStrategic or Co-development PartnerCollaborative project with NHS Sickle Cell and Thalassaemia Screening Programme focused on antenatal and newborn screening awareness, carrier information resources, and supporting at-risk couples.
• NHS RHO (Registered Health Organisation) Transitions ProjectcoreStrategic or Co-development PartnerThe Sickle Cell Society is partnered with NHS RHO on the Transitions Project, a national collaboration to develop a framework supporting young people to prepare for transition from paediatric to adult healthcare services. Updates shared via dedicated blog.
• Community Advocates NetworkminorChannel Partner/ Reseller/ DistributorA network of trained community-based Advocates who use their personal and professional networks (family, friends, churches, workplaces, leisure interests) to raise awareness of blood donation importance and encourage peer sign-ups to the donor register.

Scale indicators5 records

Recent moves6 records

Expansion highlights6 records

Broad incumbents

• Marie Curie: A major UK charity providing direct care services, a national information and support helpline, and policy advocacy for people with terminal illness. Comparable to the Sickle Cell Society in operating a free national helpline and community-facing services funded primarily by donations.
• British Heart Foundation: One of the UK's largest health charities, running a national helpline, peer-support programmes, professional education, and a research-grant function funded by donations and legacies. Comparable as a large, UK-only, donation-funded health charity with parallel service lines.
• Macmillan Cancer Support: The UK's largest cancer charity, operating a comparable model of national helpline, information services, peer/community support, professional education, and policy advocacy funded by donations. Not condition-specific to sickle cell, but directly comparable in service-delivery architecture and donor-funded scale.
• CLIC Sargent (Young Lives vs Cancer): UK charity supporting children and young people with cancer and their families — highly comparable in providing family retreats, peer support, benefits/education advocacy, and clinical-professional education for a specific under-served patient population.
• Terrence Higgins Trust: UK health charity providing a national helpline, peer support, professional education, and advocacy around a specific long-term condition with strong health-inequality and Black-heritage-community relevance. Comparable service portfolio and donor-funded operating model.
• Alzheimer's Society: Major UK dementia charity operating a national helpline, information services, peer-support groups, and policy campaigns funded by donations. Closely mirrors the Sickle Cell Society's mix of direct-to-consumer support services and national policy advocacy.
• Stroke Association: UK charity supporting stroke survivors and families with a national helpline, peer mentoring, family-facing programmes, and policy influence. Operates a near-identical service portfolio to the Sickle Cell Society (helpline, mentoring, family support, advocacy, NHS partnership) on a larger scale.

Direct peers

• Kidney Care UK: UK charity supporting people affected by chronic kidney disease via a national helpline, peer support, advocacy, and information services — a near-analogous service-delivery model for a specific chronic condition with health-inequality dimensions.
• UK Thalassaemia Society: The UK Thalassaemia Society is the closest direct peer — a small national UK charity supporting people affected by thalassaemia, co-delivering the NHS Sickle Cell and Thalassaemia Screening Programme with the Sickle Cell Society. Both operate helplines, advocacy, and screening-awareness work for closely related inherited blood conditions.

Emerging players

• Anthony Nolan: UK charity running the stem-cell donor register and a direct partner of the Sickle Cell Society on sickle cell and stem cell transplant information resources. Comparable as a blood-disorder patient-support charity with donor-recruitment as a core activity and a similar UK-focused, donor-funded model.

Market position

Strengths5 records

Weaknesses4 records

Competitive moat5 records

Key risks5 records

Key highlights6 records

Customer concentration

• YouTubeyoutube.com/channel/sicklecellsociety
• Instagraminstagram.com/givebloodspreadlove
• Xx.com/SickleCellUK

Compliance1 record

Revenue estimate

Valuation estimate

Number of profiles

Profiles22 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Sickle Cell Society