CHAMP1 UK

What CHAMP1 UK does

CHAMP1 UK is a UK-registered charity (Charity Number 1204985) founded in 2022 by Scott and Sarah Hutchings in Wimborne Minster, Dorset, after their daughter Sienna was diagnosed with CHAMP1, an ultra-rare genetic neurodevelopmental disorder affecting approximately 1 in 52 million people and with only around 170 documented diagnoses worldwide as of 2024. The organization provides information, peer support, and advocacy for families affected by CHAMP1, and is run by a small board of trustees (1–10 total people) that includes founders with personal lived experience, a Special Educational Needs (SEN) professional with 10+ years of experience, and Jeff D'Angelo, co-founder of the US-based CHAMP1 Research Foundation.

The charity's core offerings are community-based rather than technology-based: a private Facebook support group for peer advice, an interactive UK map of CHAMP1 families, a Family Story platform featuring individual "CHAMP1ON" journeys, comprehensive educational resources on CHAMP1 genetics and care, and a "Just Diagnosed" on-ramp for newly identified families. Services are delivered free of charge through digital channels (website, WhatsApp, Facebook, Instagram, Twitter/X, LinkedIn) and reach families not only in the UK but also in the United States, Canada, Czech Republic, and elsewhere in Europe.

CHAMP1 UK has no commercial product, no proprietary technology stack, and no disclosed revenue. Its operating model is donation-funded, and it partners strategically with the CHAMP1 Research Foundation to align patient support with ongoing scientific research into the disorder. The charity's strategic intent is to reduce isolation, improve access to therapies and entitlements, and accelerate research for an ultra-rare disease community where it is effectively the only UK-based dedicated support organization.

Name

CHAMP1 UK

Legal name

CHAMP1 UK

Website

https://champ1.uk

Company type

Private

Founded year

2022

Operating status

Operating

Headcount range

1–10 employees

Short description

CHAMP1 UK is a UK-registered charity founded in 2022 that provides information, peer support, advocacy, and community connections for families affected by CHAMP1, an ultra-rare genetic neurodevelopmental disorder affecting roughly 1 in 52 million people.

Ownership category

akta.pro rank

Product category

Rare Disease Support Services

NAICS

Voluntary Health Organizations (813212)

SIC

Services-Social Services (8300)

akta.pro primary industry

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

akta.pro secondary industry

Public Health & Health Equity Organizations (BPAGACAL)

Keywords

• Rare disease support
• Genetic disorder charity
• Family advocacy services
• Patient community support
• Special educational needs

Headquarters

HQ city

Wimborne Minster

HQ country

United Kingdom

HQ region

Europe

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Distribution channels1 record

Marketing channels6 records

Core offering

CHAMP1 UK is a registered UK charity that provides information, support, and advocacy services to families affected by CHAMP1 genetic disorders. The organization operates a private family support Facebook group, hosts an interactive UK CHAMPs map to help families locate regional resources and connections, and delivers advocacy work to improve awareness and outcomes for those living with CHAMP1 conditions.

Product overview

CHAMP1 UK is a single-service charity organization that provides community support, information resources, and peer connections for families affected by CHAMP1 disorder. The organization does not offer a technology product or software platform. Its core offerings consist of: a private Facebook support group for family peer support, an interactive UK map showing family locations, comprehensive educational materials about CHAMP1 on its website, and a family story platform showcasing individual CHAMP1ON journeys. All services are community-focused support offerings rather than commercial software products.

Differentiator

Problem solved

Functional benefit

Products and services

• Private Family Support Group A private online community where families affected by CHAMP1 disorders can connect, share experiences, and receive peer support from others facing similar challenges. Targeted at parents and caregivers in the UK dealing with an ultra-rare CHAMP1 diagnosis.
• UK CHAMPs Interactive Map An interactive map-based tool that helps UK families affected by CHAMP1 disorders locate regional resources, support networks, and connect with other affected families in their area. Targeted at UK-based families seeking localized support.
• CHAMP1 Information Resources Curated information resources and educational content explaining CHAMP1 genetic disorders, available treatments, and care considerations. Targeted at newly diagnosed families and caregivers seeking condition-specific knowledge.
• Family Advocacy Services Advocacy services that represent and amplify the voices of families affected by CHAMP1 disorders, working to raise awareness, improve access to services, and influence policy in areas such as special educational needs and healthcare. Targeted at UK families needing representation and at policymakers and service providers.

Segments1 record

Ideal customer profiles1 record

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

One partnership is on record.

• CHAMP1 Research FoundationcoreStrategic or Co-development PartnerCHAMP1 UK works closely with the CHAMP1 Research Foundation, co-founded by Jeff D'Angelo (also a trustee of CHAMP1 UK). Jeff D'Angelo is described as the leading non-medical expert in CHAMP1. The organizations share the mission of supporting CHAMP1 families and advancing research. The Foundation has extensive genetic research underway and has organized conferences.

Scale indicators3 records

Recent moves6 records

Expansion highlights4 records

Direct peers

• Unique (Rare Chromosome Disorder Support Group): UK-based charity providing information and support to families affected by rare chromosome disorders. Directly comparable as a small UK rare-disease family-support nonprofit serving ultra-rare patient populations.
• SWAN UK (Syndromes Without A Name): UK charity supporting families of children with undiagnosed genetic conditions. Comparable as a UK-based, family-focused rare-disease support nonprofit with similar community-building and information-provision model.
• CHAMP1 Research Foundation: Sister organization co-founded by CHAMP1 UK trustee Jeff D'Angelo, focused on advancing CHAMP1 genetic research and organizing conferences. Directly comparable as a disease-specific CHAMP1 advocacy/research nonprofit sharing personnel and mission with CHAMP1 UK.

Broad incumbents

• National Organization for Rare Disorders (NORD): US-based umbrella organization supporting rare-disease patient communities. Comparable as the broad incumbent in rare-disease advocacy, with a model CHAMP1 UK could emulate as it scales internationally.
• Mencap: Large UK charity supporting people with learning disabilities, many of whom have underlying genetic conditions. Comparable in serving families with neurodevelopmental disability, though broader and more established.
• Contact (for families with disabled children): UK charity supporting families of disabled children, including those with rare genetic conditions. Comparable in offering family support, advice on entitlements, and community resources—broader in scope but overlapping on target families.
• Rare Disease UK: UK campaign focused on improving services for people with rare diseases. Comparable as a national-level rare-disease advocacy organization relevant to CHAMP1 UK's policy and awareness-raising work.
• EURORDIS (Rare Diseases Europe): European alliance of rare-disease patient organizations. Comparable as a broader rare-disease umbrella body relevant to CHAMP1 UK's expansion across Europe.
• Genetic Alliance UK: National umbrella charity representing over 200 rare-disease patient organizations in the UK. Comparable as a broader incumbent in the rare-disease support space, with CHAMP1 UK potentially fitting as a member organization.

Regional players

• CLIMB (Children Living with Inherited Metabolic Diseases): UK charity supporting children with inherited metabolic diseases. Comparable as a UK rare-disease family-support nonprofit, operating in an adjacent disease category.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat4 records

Key risks5 records

Key highlights5 records

Customer concentration

• Xtwitter.com/champ1uk
• Facebookfacebook.com/CHAMP1UK
• LinkedInlinkedin.com/company/champ1uk
• Instagraminstagram.com/CHAMP1UK

Revenue estimate

Valuation estimate

Number of profiles

Profiles3 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about CHAMP1 UK