Nerve Tumours UK
- Company typePrivate
- Founded1981
- HeadquartersLondon, United Kingdom
- Headcount1–10
- GTM typeB2C
- OfferingServices
Nerve Tumours UK firmographics
Firmographics- Name
- Nerve Tumours UK
- Legal name
- The Neurofibromatosis Association
- Website
- https://nervetumours.org.uk
- Company type
- Private
- Founded year
- 1981
- Operating status
- Operating
- Headcount range
- 1–10 employees
- Ownership category
- akta.pro rank
Nerve Tumours UK industry classification
Industry- Product category
- Patient Advocacy and Support Services
- NAICS
- Other Individual and Family Services (624190), Individual and Family Services (6241), Social Assistance (624)
- SIC
- Services-Social Services (8300), Services-Health Services (8000), Services-Misc Health & Allied Services, Nec (8090)
- akta.pro primary industry
- Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)
- akta.pro secondary industries
- Financial Assistance & Benefits Navigation Services (BPAGAEAK), Mental Health & Crisis Support Services (BPAGAEAH)
Keywords
Where Nerve Tumours UK is headquartered
LocationHeadquarters
- HQ city
- London
- HQ country
- United Kingdom
- HQ region
- Europe
Offices2 records
Markets served
Nerve Tumours UK business model
Business model- GTM type
- B2C
- Offering type
- Services
- Cost components
- Personnel, Operations, Marketing or Sales, Technology or R&D, Infrastructure
Revenue model
- Voluntary Donations: Nerve Tumours UK is 100% funded by voluntary donations. The charity accepts one-off and regular donations through its website and JustGiving platform, with Gift Aid options available for UK taxpayers. Donation amounts of £5, £10, and £50 are promoted on the website.
- Membership: The charity offers membership/supporter status for individuals who wish to join the NTUK community and support the charity's work. Membership accounts are managed through the online shop platform.
- Online Shop Sales: The charity operates an e-commerce shop at shop.nervetumours.org.uk selling branded merchandise and items, generating revenue from product sales.
- Challenge Events and Fundraising: Revenue is generated through participants registering for and raising funds through challenge events such as the London to Brighton Cycle Ride, virtual challenges, and the Shine A Light on NF campaign. Fundraisers create pages on JustGiving.
- Legacies (Bequests in Wills): The charity encourages supporters to leave a gift in their will, which can be a residuary gift (share of estate) or pecuniary gift (fixed sum). Legacies can be unrestricted or designated for specific purposes such as funding specialist nurses or research.
- Corporate Giving: The charity has a corporate giving program and has been selected as a Master's Charity (e.g., Worshipful Company of Horners). Corporate partners may engage in payroll giving, matched funding, or designated fundraising campaigns.
- Recycling and Shopping: The charity generates revenue through recycling schemes and shopping initiatives where supporters can contribute to fundraising through everyday activities.
Pricing tiers
| Model | Billing | Price |
|---|---|---|
| Other | One-time or recurring | General Donation |
Go-to-market motion2 records
Distribution channels5 records
Marketing channels9 records
Nerve Tumours UK product offering
Product offeringCore offering
Nerve Tumours UK is a UK-registered charity providing specialist support, information, and advocacy services for people affected by Neurofibromatosis (NF1, NF2-related-Schwannomatosis, and Schwannomatosis). The charity's core services include a National NF Helpline staffed by Specialist NF Nurses, a network of Specialist NF Nurse/Advisors embedded in NHS Trusts across the UK, the iNForm Resource Series (expert-written guides for GPs, schools, universities, workplaces, and transitions to adult services), medical guidelines and clinical resources, online peer support communities, and an e-commerce merchandise shop. The organization is 100% funded by voluntary donations and operates across the United Kingdom.
Product overview
Nerve Tumours UK is a UK-based charity providing support services for people affected by Neurofibromatosis (NF), which encompasses NF1, NF2-related-Schwannomatosis (NF2), and Schwannomatosis (SWN). The organization offers a unified service portfolio centered on its National NF Helpline operated by Specialist NF Nurses, supported by a network of regionally-based NF Nurse/Advisors. Key offerings include the iNForm Resource Series (guides for GPs, schools, universities, workplaces, and transition to adult services), an online Fundraising Hub, an e-commerce Shop, Medical Guidelines for healthcare professionals, the annual Shine a Light on NF awareness campaign, and Social Media Support Communities on Facebook. The organization is 100% funded by voluntary donations.
Differentiator
Problem solved
Functional benefit
Products and services
- National NF Helpline A national helpline operated by Specialist NF Nurses that provides information, support, and guidance to people affected by Neurofibromatosis (NF) and their families. It is available to those without regional access to specialist services or anyone with an urgent need. Operating hours are Mondays, Wednesdays and Fridays 9am-5pm, with Head Office callback appointments on Tuesdays and Thursdays. Contactable via phone (07939 046 030, Freephone 0300 102 17 22) and email ([email protected]).
- iNForm Resource Series Expert-written guides and ready-to-use materials designed to help people with NF inform key stakeholders about the condition. The series includes iNForm your GP, iNForm your School, iNForm your Transition to Adult Services, iNForm your University, and iNForm your Workplace. Each guide provides tailored information for the specific audience to support people affected by NF.
- Specialist NF Nurse/Advisor Network A network of regionally-based Specialist NF Nurse/Advisors based within NHS Trusts around the UK who support and advise patients on every aspect of their care, not just in clinics but across all areas of their lives. Funded by Nerve Tumours UK, this network provides specialist clinical support within the NHS system.
- Online Shop An e-commerce store at shop.nervetumours.org.uk powered by Shopify, selling branded merchandise and NF-related products. The shop also handles memberships, subscriptions, and donations with Gift Aid options, generating revenue to support the charity's work.
Quantifiable outcome
- 26,500+ people with NF in the UK supported
- +3 more outcomes
Companies that use Nerve Tumours UK
Customer profileNamed customers10 records
Segments6 records
Ideal customer profiles5 records
Nerve Tumours UK technology and API
TechnologyTechnology focussed No
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
Integration4 records
Feature4 records
Nerve Tumours UK partnerships and signals
Strategic signalPartnerships
Four partnerships are on record, tiered core and minor.
- Children's Tumor Foundation (CTF) EuropecoreNerve Tumours UK collaborates with CTF Europe in the global 'Shine A Light on NF' campaign, now in its 10th year. NTUK leads the UK and Republic of Ireland component of this international initiative, coordinating the lighting of landmarks and buildings in blue on World NF Awareness Day (17 May). Over 400 buildings were lit globally in 2025, with participation from USA, Canada, Australia, China, Italy, Thailand, and Singapore.
- UK HospitalitycoreNerve Tumours UK partnered with UK Hospitality following an incident where an NF1 patient was asked to leave a restaurant due to his visible difference. Karen Cockburn (Charity Director) wrote to UK Hospitality to raise awareness and offer to work together. Their Equity, Diversity and Inclusion (EDI) group reviewed the case and NF1 information provided, and agreed to produce official guidance for the hospitality sector on NF and visible differences. Kate Nicholls, Chief Executive of UK Hospitality, stated the sector has a proud history of providing safe spaces for everyone and committed to continuing the work together.
- Worshipful Company of HornerscoreThe Worshipful Company of Horners, an ancient guild and modern city institution, selected Nerve Tumours UK as its Master's Charity for the forthcoming year. Karen Cockburn (Charity Director) and Richard Goode (Chair of Board of Trustees) attended the Installation Court at Painter Stainers' Hall in February. The Deputy Master, Rebecca Joyce, undertook an aerobatic wing walk on 7 July 2026 to raise funds for NTUK via The Horners Charity Fund.
- The Helpline HubminorNerve Tumours UK participates in The Helpline Hub, a partnership of helplines that provides a finder service for people seeking support. NTUK is listed alongside other member organisations, increasing the visibility of its National NF Helpline to people seeking help.
Scale indicators6 records
Recent moves5 records
Expansion highlights5 records
Nerve Tumours UK competitors and assessment
Company assessmentBroad incumbents
- Cancer Research UK: UK's largest health-research charity. Comparable in its focus on awareness campaigns, mass-participation fundraising events, and educational content, though operating at vastly greater scale and with a research-led mission.
- Genetic Alliance UK: UK national charity working to improve the lives of people affected by genetic conditions. Highly relevant peer given NF is a genetic neurocutaneous condition and Genetic Alliance UK engages on similar policy, research and patient-support themes.
- Macmillan Cancer Support: Large UK disease-specific charity operating a comparable model (specialist helpline, peer community, information resources, fundraising events, retail). Useful benchmark for charity operating model even though clinical focus differs.
- National Organization for Rare Disorders (NORD): US-based umbrella for rare-disease patient organisations. Comparable in mission and operating model (information resources, advocacy, community) but serves a far larger population of rare diseases.
- Rare Diseases UK: The umbrella alliance for rare-disease patient organisations in the UK. NTUK operates in the same rare-disease patient-support space but as a disease-specific specialist rather than a cross-condition alliance.
- EURORDIS – Rare Diseases Europe: European-level alliance representing rare-disease patient organisations. NTUK operates within the same rare-disease advocacy space; EURORDIS provides the broader policy/European Commission engagement that NTUK benefits from indirectly.
Direct peers
- The Neurofibromatosis Association of Australia: Australian national NF patient-support and advocacy charity, offering the same disease-specific support, awareness, and community services as NTUK but in a different geography — making it a strong regional peer.
- NF Network: US-based patient-advocacy network for people living with neurofibromatosis. Highly comparable in mission (NF1/NF2/SWN support, awareness, community-building) and similar operating model of national helpline-style support, though US-focused.
- Children's Tumor Foundation: The leading US-based NF research and patient-advocacy organisation and direct global partner of NTUK on the Shine A Light campaign. Operates a near-identical mission (NF1, NF2, SWN research, awareness and patient support) at a much larger scale, making it the closest comparable peer.
Emerging players
- Brain Tumour Charity: UK charity supporting people affected by brain tumours. Adjacent rather than overlapping — it is the obvious analogue if NTUK's nerve-tumour focus is broadened to neurological tumour support more generally, but its condition scope differs.
Market position
Strengths5 records
Weaknesses5 records
Competitive moat4 records
Key risks5 records
Key highlights7 records
Customer concentration
Nerve Tumours UK social profiles
Digital presenceNerve Tumours UK financial estimates
Financial estimateRevenue estimate
Valuation estimate
Nerve Tumours UK leadership team
Management profileNumber of profiles
Profiles2 records
Nerve Tumours UK funding detail
Funding detailFunding overview
Funding rounds
Investors
Funding detail is available on the Subscription and Enterprise plan.Contact sales →
Nerve Tumours UK M&A and investment
M&A and investmentM&A
Investments
M&A and investment is available on the Subscription and Enterprise plan.Contact sales →
Frequently asked questions about Nerve Tumours UK
What does Nerve Tumours UK do?
Nerve Tumours UK is a UK-registered charity providing specialist support, information, and advocacy services for people affected by Neurofibromatosis (NF1, NF2-related-Schwannomatosis, and Schwannomatosis). The charity's core services include a National NF Helpline staffed by Specialist NF Nurses, a network of Specialist NF Nurse/Advisors embedded in NHS Trusts across the UK, the iNForm Resource Series (expert-written guides for GPs, schools, universities, workplaces, and transitions to adult services), medical guidelines and clinical resources, online peer support communities, and an e-commerce merchandise shop. The organization is 100% funded by voluntary donations and operates across the United Kingdom.
Is Nerve Tumours UK a public or private company?
Nerve Tumours UK is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was Nerve Tumours UK founded?
Nerve Tumours UK was founded in 1981. It employs 1 to 10 people.
Where is Nerve Tumours UK based?
Nerve Tumours UK is headquartered in London, United Kingdom, in the Europe region.
How does Nerve Tumours UK make money?
Seven revenue lines are on record. Voluntary Donations are the primary driver. The others are membership, online Shop Sales, challenge Events and Fundraising, legacies (Bequests in Wills), corporate Giving and recycling and Shopping.
Who are Nerve Tumours UK's main competitors?
Broad incumbents on record are Cancer Research UK, Genetic Alliance UK, Macmillan Cancer Support, National Organization for Rare Disorders (NORD), Rare Diseases UK and EURORDIS – Rare Diseases Europe. Direct peers are The Neurofibromatosis Association of Australia, NF Network and Children's Tumor Foundation. Brain Tumour Charity is listed as an emerging player.
Does Nerve Tumours UK have an API?
No public API is recorded for Nerve Tumours UK.
What industry is Nerve Tumours UK in?
Nerve Tumours UK's product category is Patient Advocacy and Support Services. Its primary akta.pro industry code is BPAGACAA, Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS), with a secondary code of BPAGAEAK, Financial Assistance & Benefits Navigation Services. Its NAICS code is 624190 and its SIC code is 8300.