Scoliosis Support and Research

What Scoliosis Support and Research does

Scoliosis Support and Research (SSR) is a UK registered charity (charity number 1181463) formed in 2023 through the merger of Scoliosis Association UK (founded 1981) and The British Scoliosis Research Foundation (founded 1973). It is the only UK-wide organisation dedicated to supporting individuals and families affected by scoliosis and funding research into the condition. Revenue is sourced entirely from public donations, regular giving memberships, legacies, merchandise, and community fundraising — SSR receives no government funding. The organisation is based in London with a staff of 11, governed by a Board of Trustees, and holds royal patronage from HRH Princess Eugenie.

SSR's service portfolio spans a helpline (020 8964 1166), a Find a Specialist directory, online peer support groups facilitated by a qualified counsellor, in-person patient events of up to 100 attendees across UK locations, talking therapy services, the Hill Pedder and Minns financial assistance fund, and the twice-yearly Backbone magazine. Information and awareness products include the Know The Facts booklet, the ABCD of Scoliosis campaign, the Living with Scoliosis documentary, and a downloadable resource library targeting schools, workplaces, and community groups. The research arm funds Standard Research Grants up to £99,000 and Major Research Grants up to £100,000 per year for up to two years, alongside travel grants and the annual Zorab Symposium, with active partnerships across at least nine UK universities.

The go-to-market model is community-led and direct-to-consumer, relying on social media (Facebook, Instagram, X, LinkedIn, YouTube), email newsletters, influencer partnerships, press outreach, and challenge events (Step for Scoliosis, Walk Together, marathon/trek participations). Technology infrastructure is limited to standard charity platforms: JustGiving for fundraising, PayPal for payments, MailChimp for email, Blackbaud E-Tapestry for CRM, and Google Analytics for web analytics. No AI/ML capabilities are deployed. The charity serves an addressable population of 2 million+ UK people with scoliosis, with a current community of 1,500+ members and 5,000+ Facebook support group members.

Name

Scoliosis Support and Research

Legal name

Scoliosis Support and Research

Website

https://ssr.org.uk

Company type

Private

Founded year

2023

Operating status

Operating

Headcount range

11–50 employees

Short description

Scoliosis Support and Research (SSR) is the UK's only nationwide charity dedicated to scoliosis, formed in 2023 from the merger of Scoliosis Association UK and the British Scoliosis Research Foundation. It supports 2 million+ affected individuals through helplines, peer groups, therapy, research grants, and awareness campaigns, funded entirely by public donations.

Ownership category

akta.pro rank

Product category

Patient Advocacy and Healthcare Charity

NAICS

Individual and Family Services (6241), Research and Development in the Social Sciences and Humanities (541720)

SIC

Services-Social Services (8300)

akta.pro primary industry

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

akta.pro secondary industries

Financial Assistance & Benefits Navigation Services (BPAGAEAK), Spine (Orthopedic Spine) (HLAKALAE)

Keywords

• Scoliosis support services
• Patient advocacy charity
• Medical research funding
• Peer support groups
• Health awareness campaigns

Headquarters

HQ city

London

HQ country

United Kingdom

HQ region

Europe

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Revenue model

1. Donations and Fundraising: Primary revenue stream from public donations, one-time and regular giving. No government funding. Includes JustGiving pages for birthdays and memorials with automatic Gift Aid claims.
2. Community Membership: Regular donation-based membership providing access to services including Backbone magazine, patient event invitations, Hill Pedder and Minns Fund access, online support groups, and talking therapy services. Formerly £15 annual fee, now regular donation model.
3. Legacies and Bequests: Supporters can leave a gift in their Will to ensure continued support for people affected by scoliosis and fund essential research.
4. Online Shop Sales: Branded merchandise including t-shirts and running vests available through the online store.

Pricing tiers

Go-to-market motion2 records

Distribution channels5 records

Marketing channels11 records

Core offering

Scoliosis Support and Research (SSR) is a UK-registered charity that delivers direct support services, information resources, and research funding for individuals and families affected by scoliosis. Core offerings include a national helpline, specialist finder service, online peer support groups facilitated by a qualified counsellor, patient events across the UK, talking therapy services, and a financial assistance fund. The charity also publishes a twice-yearly magazine, downloadable educational resources, and funds scoliosis research through standard and major research grants plus an annual research symposium.

Product overview

Scoliosis Support and Research (SSR) is the UK's leading scoliosis charity, formed in 2023 through the merger of Scoliosis Association UK and The British Scoliosis Research Foundation. SSR operates as a unified charity providing a comprehensive suite of support services, information resources, and research funding for people affected by scoliosis. The core offering includes a Helpline, Find a Specialist directory, Patient Events, Online Peer Support Groups, Talking Therapy Services, and the Hill Pedder and Minns Fund for financial assistance. Information resources include Backbone Magazine (twice-yearly publication), the Know The Facts booklet, ABCD of Scoliosis awareness campaign, and various downloadable materials (Scoliosis Slides, Scoliosis in Schools resources). Research activities are supported through Research Grants (Standard up to £99,000 and Major up to £100,000/year), Travel Grants, and the Zorab Symposium. Fundraising programs include Step for Scoliosis, Challenge Events, Walk Together, and Back The Curve community initiative. The organization receives no government funding and relies on public donations and membership contributions.

Differentiator

Problem solved

Functional benefit

Products and services

• Helpline Services Telephone helpline (020 8964 1166) and email support service ([email protected]) for individuals and families affected by scoliosis, available Monday to Friday 9am to 5pm.
• Find a Specialist Directory service connecting patients with scoliosis specialists across the UK, providing contact details to take to their GP for referral.
• Patient Events Annual events of up to 100 attendees held in locations across the UK, featuring specialist talks and opportunities for individuals and families affected by scoliosis to connect.
• Online Peer Support Groups Online support groups facilitated by a qualified counsellor, covering various age groups, helping individuals connect with others affected by scoliosis.
• Hill, Pedder and Minns Fund Financial assistance fund available to members to help with certain items or travel costs related to scoliosis care.
• Talking Therapy Services Therapeutic support services accessible to members, providing emotional and psychological support for those affected by scoliosis.
• Research Grants Research grant funding for scoliosis and spinal conditions research, including Standard Research Grants up to £99,000 and Major Research Grants up to £100,000 per year for up to two years.
• Travel Grants Research travel grants supporting researchers, clinicians, and allied health professionals to attend conferences and pursue scoliosis research opportunities.
• Zorab Symposium Annual research symposium named after Dr Philip Zorab, the founder of the British Scoliosis Research Foundation, stimulating new scoliosis research worldwide.
• Backbone Magazine Twice-yearly in-house magazine featuring inspiring personal stories, expert advice from specialists and healthcare professionals, and the latest updates from the scoliosis community.
• Community Membership Regular donation-based membership programme providing access to Backbone magazine, priority event invitations, Hill Pedder and Minns Fund eligibility, online support groups, and talking therapy services.
• Donation Processing Secure donation processing service accepting one-off and regular donations, legacies (gifts in Wills), and in-memory or celebration donations, including Gift Aid claim processing.
• Step for Scoliosis Fundraising challenge encouraging participants to walk, run, or move throughout the month while raising money for SSR, with partnership training support from Sapphire Running Zone.
• Walk Together Nationwide walking movement for scoliosis awareness, support, and community building, taking place across multiple UK locations simultaneously during Scoliosis Awareness Month.
• Challenge Events Fundraising participation programme offering events including 5Ks to marathons, muddy obstacle runs, mountain treks, and swimming challenges, with training resources and fundraising rewards.
• Back The Curve Business and community initiative empowering workplaces, schools, clubs, and community groups to take action for people living with scoliosis through awareness activities, fundraising events, and educational engagement.
• Join The Curve Volunteer Programme Volunteer programme bringing together individuals who want to make a difference in their local communities through awareness campaigns, events, outreach, and support activities.
• Living with Scoliosis Documentary Documentary short film featuring raw, honest personal stories from people living with scoliosis, covering diagnosis, surgery, pain management, and body image, to help the community feel seen and raise public awareness.

Named customers3 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

Integration6 records

Feature1 record

Partnerships

14 partnerships are on record, tiered minor and core.

• Sapphire Running ZoneminorGTM or Marketing PartnerPartnership providing free 12-month membership to running support platform for challenge event participants. Includes expert training plans, coaching tips, and motivation to help fundraisers complete their challenges.
• Local volunteer hostscoreOthersVolunteers across 16 UK locations (Cambridge, Cardiff, Nottingham, Cumbria, Northamptonshire, Yeovil, Isle of Wight, Birmingham, Manchester, Oxford, Brighton, Glasgow, Kidsgrove, Durham, Shrewsbury, London) hosted Walk Together 2026 events.
• University of Dundee (Biomechanics Department)coreStrategic or Co-development PartnerFunded research partner for multiple studies: gait analysis in scoliosis severity and intervertebral disc stiffness research. Previously Stafford University, relocated after department closure.
• Birmingham UniversitycoreStrategic or Co-development PartnerFunded £38,759.73 for art-based research on patient impact of adolescent idiopathic scoliosis. Published in BMJ Medical Humanities and The Lancet Child & Adolescent Health. Artwork exhibited at IKON Gallery, Birmingham.
• Exeter UniversitycoreStrategic or Co-development PartnerFunded £39,948 for thoracic vertebral shape research developing new description methods for vertebral deformation in scoliosis curves. Won first prize at 2024 British Scoliosis Society meeting.
• Newcastle UniversityminorStrategic or Co-development PartnerFunded £14,456 for metal wear and failure research on magnetically operated scoliosis rods. Project completed, presented at international meeting.
• Queen's University BelfastcoreStrategic or Co-development PartnerFunded core outcome set development for assessing treatment outcomes in scoliosis. Work completed and submitted to Bone & Joint Open.
• Sheffield UniversitycoreStrategic or Co-development PartnerFunded brace compliance prediction questionnaire development and full-time versus night-time bracing comparative study. Both projects advancing patient care.
• University College LondonminorStrategic or Co-development PartnerFunded gait stability research investigating whether gait changes correlate with scoliosis severity as potential alternative to X-rays.
• Teesside UniversityminorStrategic or Co-development PartnerFunded trunk shape research comparing 3D imaging with X-ray findings to track scoliosis progression without repeated radiation.
• Aston UniversitycoreStrategic or Co-development PartnerFunded £77,031 for decision-making research in adult scoliosis surgery for patients over 55 across three UK scoliosis centres.
• Royal Osteoporosis SocietyminorStrategic or Co-development PartnerExpert contribution on osteoporosis and scoliosis connection. Sarah Leyland (Osteoporosis Specialist Nurse) provided FAQ content for community resource on living with both conditions.
• Pain ConcernminorStrategic or Co-development PartnerExpert contribution on managing emotions with chronic pain. Dr David Craig (NHS Consultant Psychologist) and Dr Katy Gordon provided educational content for pain management resources.
• Grace Tutty (Social media influencer)minorGTM or Marketing PartnerScoliosis advocate and influencer with 1.7+ million followers across TikTok, Instagram, and YouTube. Provided voiceover for ABCD of Scoliosis awareness campaign video.

Scale indicators6 records

Recent moves7 records

Expansion highlights5 records

Direct peers

• Versus Arthritis: UK-wide musculoskeletal charity providing support, information and research funding across arthritis and related musculoskeletal conditions. Closely comparable structure to SSR: condition-specific nonprofit combining helpline, peer support, patient information, and a research grant programme.
• Royal Osteoporosis Society: UK charity focused on osteoporosis and bone health, with a similar mix of patient support services, research funding, professional education, and policy work. SSR lists it as an active partner, indicating direct thematic overlap on bone/spine health.
• Muscular Dystrophy UK: UK charity supporting people with muscular dystrophy and related neuromuscular conditions (which overlap with neuromuscular scoliosis). Operates a comparable model of specialist information, peer support, and research grants.
• Spinal Injuries Association: UK charity supporting people with spinal cord injury through peer support, advocacy, and information services. Comparable in delivering condition-specific support services for spinal patients in the UK, though with a different clinical population.
• Pain Concern: UK charity providing information and support for people living with chronic pain, including scoliosis-related pain. Listed as an active content partner of SSR, with similar service model (information resources, helpline, online community).

Broad incumbents

• British Heart Foundation: One of the UK's largest health charities, funding cardiovascular research and patient support. Comparable in combining donation-based fundraising, research grants, and patient information, but operates at vastly greater scale than SSR.
• Cancer Research UK: UK's largest disease-focused research charity, with a dominant donation- and legacy-driven funding model and a major research grant portfolio. Useful as a benchmark for scale and donor-development practices, though far larger than SSR.

Emerging players

• Epilepsy Society: UK charity combining support services with research funding for a single neurological condition. Comparable operating model to SSR with helpline, information resources, and grant-funded research.
• MS Society: Major UK disease-specific charity combining patient support, helpline, peer community, and a large research grant programme. More established and better-funded than SSR, but operates a comparable nonprofit support-and-research model for a specific condition.
• Parkinson's UK: UK condition-specific charity providing helpline, peer support, local groups, and research funding. Comparable GTM and operating model, though with much larger scale and budget than SSR.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks6 records

Key highlights6 records

Customer concentration

• Xx.com/Scoliosis_SR
• YouTubeyoutube.com/@scoliosisassociationuk3566
• Facebookfacebook.com/ScoliosisSR
• LinkedInlinkedin.com/company/scoliosis-support-research
• Instagraminstagram.com/scoliosis_sr

Compliance3 records

Revenue estimate

Valuation estimate

Number of profiles

Profiles11 records

Funding overview

Funding rounds

Investors

Funding detail is available on the Subscription and Enterprise plan.Contact sales →

M&A

Investments

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

Frequently asked questions about Scoliosis Support and Research