CMTUK

What CMTUK does

CMTUK (Charcot-Marie-Tooth UK) is a UK-registered charity founded in 1986 that supports people living with Charcot-Marie-Tooth disease, a hereditary peripheral neuropathy affecting an estimated 25,000 people in the UK and 3 million globally. The organisation delivers a portfolio of community and information services rather than proprietary technology: a donation-based membership scheme with annual ComMenT newsletter; nine UK regional support groups; dedicated CMT Kids and Big Kids programmes for children and young adults; monthly online carers and parents support groups; an annual conference; and a European webinar series delivered in partnership with EURO-NMD. Underlying delivery is built on standard, low-cost infrastructure — a WordPress website at cmt.org.uk and a self-serve members portal at members.cmt.org.uk — with no proprietary software products or AI capabilities.

The business model is entirely donation-driven. CMTUK receives no government funding and operates as a private charity (Charity No. 1112370, Company No. 05574584) with five employees headquartered in Bournemouth. Revenue streams comprise recurring membership subscriptions on a donation basis, one-off donations routed through the Enthuse platform, Gift Aid reclamation on eligible donations, and merchandise sales through an online shop. The organisation has committed £40,000 to the UK CMT Register and serves as a conduit for anonymised patient data to academic and clinical researchers, anchoring its research funding role.

Go-to-market is community-led: the charity grows via word-of-mouth, social media (Facebook, LinkedIn, Instagram, YouTube), email newsletters, the annual conference, and a network of regional and online support groups. Distribution is domestic to the United Kingdom, supplemented by European-level collaboration through the European Charcot-Marie-Tooth Federation (ECMTF) and EURO-NMD. Strategic positioning rests on multi-stakeholder alliances — including the Neurological Alliance (35+ organisations), Neurological Alliance of Scotland, and Genetic Alliance UK — which collectively amplify CMTUK's advocacy voice on neurological workforce and care access.

Name

CMTUK

Legal name

Charcot-Marie-Tooth UK

Website

https://cmt.org.uk

Company type

Private

Founded year

1986

Operating status

Operating

Headcount range

1–10 employees

Short description

CMTUK is a donation-funded UK charity, founded in 1986, that supports people living with Charcot-Marie-Tooth disease through regional support groups, a membership scheme, the CMT Kids and Big Kids programmes, an annual conference, and £40,000 of research funding via the UK CMT Register.

Ownership category

akta.pro rank

Headquarters

HQ city

England, Dorset

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

Revenue model

1. Donations: CMTUK is entirely donation-funded, with no government funding. The charity relies on the generosity of members and supporters through fundraising initiatives and direct donations.
2. Membership Subscriptions: Annual membership subscriptions provide access to resources, support networks, events, and exclusive member benefits on a donation basis.
3. Merchandise Sales: The charity sells merchandise through its online shop, providing additional revenue streams.
4. Gift Aid: UK tax-efficient donation scheme allowing the charity to reclaim basic rate tax on eligible donations.

Pricing tiers

Go-to-market motion1 record

Distribution channels6 records

Marketing channels11 records

Core offering

CMTUK (Charcot-Marie-Tooth UK) is a UK-registered charitable organization that provides support, information, and community connection services to people living with Charcot-Marie-Tooth disease and their families. Its offerings include a donation-based membership scheme, regional and online support groups, dedicated programs for children and young adults, an annual conference and webinar series, a helpline, and funded research via the UK CMT Register.

Product overview

CMTUK is a UK-based charitable organization (Charity number: 1112370) providing support, education, and research funding for people affected by Charcot-Marie-Tooth disease. The organization operates a donation-based membership scheme as its core offering, which provides access to the ComMenT newsletter, regional support groups, and member benefits. Additional programs include CMT Kids and Big Kids programs for children and young adults, specialized support groups for carers and parents/guardians, and the annual CMTUK Conference. The organization facilitates online community connections through Zoom-based meetings and webinars, maintains the UK CMT Register for research purposes, and provides an information helpline service.

Differentiator

Problem solved

Functional benefit

Products and services

• CMTUK Membership Scheme Donation-based membership program providing access to resources, support networks, events, exclusive member benefits, and the ComMenT newsletter for people affected by Charcot-Marie-Tooth disease.
• CMT Kids Program

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

Eight partnerships are on record, tiered minor and core.

• Dorset OrthopaedicminorOthersConference sponsor for CMTUK Conference 2026. Their support helped bring the CMT community together and continue the charity's work in supporting people living with Charcot-Marie-Tooth disease.
• European Charcot-Marie-Tooth Federation (ECMTF)coreStrategic or Co-development PartnerEuropean federation working to advance the interests of people with CMT across Europe. CMTUK is a member organisation, enabling collaboration on research, awareness, and support initiatives at the European level.
• Neurological AlliancecoreStrategic or Co-development PartnerCoalition of over 35 leading organisations advocating for people with neurological conditions. CMTUK participates in joint advocacy efforts, including calls for action on England's neuro workforce crisis.
• Neuronal Alliance of ScotlandminorStrategic or Co-development PartnerScottish-focused alliance working to improve services and support for people with neurological conditions in Scotland.
• Genetic Alliance UKminorStrategic or Co-development PartnerUK alliance of patient organisations supporting those affected by genetic conditions. Partnership provides access to shared resources and collaborative opportunities.
• Fundraising RegulatorminorGTM or Marketing PartnerIndependent regulator of fundraising in the UK. CMTUK's registration demonstrates commitment to ethical fundraising practices.
• Bendrigg TrustminorStrategic or Co-development PartnerOutdoor education centre in the Lake District. Hosted the CMTUK Big Kids Weekend 2025, providing accessible facilities for young adults with CMT.
• EURO-NMDcoreStrategic or Co-development PartnerEuropean Reference Network for Rare Neuromuscular Diseases. Collaborated on Charcot-Marie-Tooth Education Month webinar series featuring expert speakers and latest research insights.

Scale indicators5 records

Recent moves6 records

Expansion highlights5 records

Direct peers

• Ataxia UK: UK charity dedicated to a specific rare hereditary neurological condition (ataxia). Direct structural peer to CMTUK: small team, donation-funded, regional support groups, research funding, and member-based support services for a rare inherited neurological disorder.
• Muscular Dystrophy UK: UK-based charity supporting people with neuromuscular conditions. Highly comparable to CMTUK in mission, structure, and operating model (donation-funded, regional support groups, research funding), but serves a broader disease portfolio including muscular dystrophy and related neuromuscular conditions.
• Spinal Muscular Atrophy UK: UK charity dedicated to a rare hereditary neuromuscular condition (SMA). Closely comparable to CMTUK as a small, donation-funded, condition-specific UK charity offering regional support, research funding, and member services for a rare inherited neuromuscular disease.

Broad incumbents

• Parkinson's UK: Large UK charity for Parkinson's disease. Comparable operating model (donation-funded, regional networks, research grants, helpline) and competes with CMTUK for neurological charity donor mindshare, but operates at much greater scale across a more high-profile disease.
• Multiple Sclerosis Society UK: Major UK charity supporting people with MS, a chronic neurological condition. Highly comparable in member services, research funding model, and regional structure, but far larger in scale and competes with CMTUK for neurological charity donations.
• Motor Neurone Disease Association: Established UK charity focused on motor neurone disease with significantly larger scale than CMTUK. Comparable as a neurological condition-specific UK charity with regional branches, research funding, and member support services, but operates at substantially greater scale.

Others

• Genetic Alliance UK: UK alliance of patient organisations supporting those affected by genetic conditions. Functions as both a partner to CMTUK and an umbrella peer, providing shared advocacy infrastructure for the rare genetic disease community CMTUK serves.
• Neurological Alliance: Coalition of 80+ UK organisations (including CMTUK) advocating for people with neurological conditions. Functions as a peer/partner in the broader UK neurological ecosystem; comparable as an advocacy infrastructure provider rather than a direct competitor.

Regional players

• Charcot-Marie-Tooth Association (CMTA): The US-based counterpart charity dedicated specifically to Charcot-Marie-Tooth disease. Closest disease-specific peer to CMTUK, sharing mission, programmes, and research interests, but operating in a different geography (United States) rather than competing in the UK.
• Hereditary Neuropathy Foundation: US-based non-profit dedicated to Charcot-Marie-Tooth disease. Direct disease peer focused on the same condition as CMTUK, sharing research and awareness goals, but operating primarily in the US rather than competing in the UK.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat5 records

Key risks6 records

Key highlights7 records

Customer concentration

• Xtwitter.com/CMTUK2
• YouTubeyoutube.com/@CMTUnitedKingdom
• Facebookfacebook.com/CMTUK2
• LinkedInlinkedin.com/company/cmt-united-kingdom
• Instagraminstagram.com/charcotmarietoothuk

Compliance2 records

Revenue estimate

Valuation estimate

Number of profiles

Profiles1 record

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 CMTUK