Annabelle's Challenge Vascular EDS Charity
Annabelle's Challenge is a UK-registered charity (founded 2013) exclusively supporting patients with Vascular Ehlers-Danlos Syndrome and their families across the UK, Ireland, Australia, and Israel. It delivers free lifetime membership, emergency preparedness resources, counselling, NHS-linked support, and research facilitation funded by donations.
- Company typePrivate
- Founded2013
- HeadquartersBury, United Kingdom
- Headcount1–10
- GTM typeB2C
- OfferingServices
What Annabelle's Challenge Vascular EDS Charity does
Annabelle's Challenge Vascular EDS Charity is a UK-registered Charitable Incorporated Organisation (CIO; Charity Commission No. 1157074) founded in January 2013 by Jared and Sarah Griffin following the diagnosis of their daughter Annabelle with vascular Ehlers-Danlos Syndrome (vEDS) at age three. It is the only UK charity exclusively dedicated to Vascular EDS, serving genetically confirmed patients and their families/carers across the UK, Ireland, Australia, and Israel. Core services are delivered through a free lifetime membership programme and include VEDS Information Packs, personalised VEDS Emergency Packs, a freephone helpline (0800 917 8495), free counselling, school support, regional and virtual support groups, retreat weekends, and an annual conference series (with the London Symposium 2026 forthcoming).
The operational platform comprises a confirmed-patient database (580+ entries), a multi-language resource library (emergency resources in 18 languages), a registered awareness brand (REDS4VEDS®), and an event programming function spanning retreats, conferences, and the annual REDS4VEDS awareness campaign. Distribution is anchored by a formal partnership with the NHS EDS National Diagnostic Service (Sheffield and London clinics) for patient referrals, with additional clinical and research partnerships including the University of Cambridge (MPEDS Study), EDS UK (NEEDS Study, co-funded 2019), The Marfan Foundation, The EDS Society, and MedicAlert. The organisation runs on a small team (Founder/CEO plus two Patient Coordinators) supported by a board of Trustees and volunteers.
The business model is non-commercial: all services are provided free of charge, with funding sourced entirely from charitable donations (single, monthly, Gift Aid, fundraising events, and designated research donations). No commercial revenue streams exist. The charity is regulated by the Charity Commission, the Fundraising Regulator, and the ICO, and holds the Queen's Award for Voluntary Service.
Annabelle's Challenge Vascular EDS Charity firmographics
Firmographics- Name
- Annabelle's Challenge Vascular EDS Charity
- Legal name
- Annabelle's Challenge Vascular EDS Charity
- Website
- https://annabelleschallenge.org
- Company type
- Private
- Founded year
- 2013
- Operating status
- Operating
- Headcount range
- 1–10 employees
- Short description
- Annabelle's Challenge is a UK-registered charity (founded 2013) exclusively supporting patients with Vascular Ehlers-Danlos Syndrome and their families across the UK, Ireland, Australia, and Israel. It delivers free lifetime membership, emergency preparedness resources, counselling, NHS-linked support, and research facilitation funded by donations.
- Ownership category
- akta.pro rank
Annabelle's Challenge Vascular EDS Charity industry classification
Industry- Product category
- Rare Disease Patient Support
- NAICS
- Voluntary Health Organizations (813212), Individual and Family Services (6241), Other Individual and Family Services (624190), Health Care and Social Assistance (62)
- SIC
- Services-Social Services (8300), Services-Health Services (8000), Services-Misc Health & Allied Services, Nec (8090)
- akta.pro primary industry
- Rare Disease & Special Needs Support Organizations (BPAGACAM)
- akta.pro secondary industry
- Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)
Keywords
Where Annabelle's Challenge Vascular EDS Charity is headquartered
LocationHeadquarters
- HQ city
- Bury
- HQ country
- United Kingdom
- HQ region
- Europe
Offices1 record
Markets served
Annabelle's Challenge Vascular EDS Charity business model
Business model- GTM type
- B2C
- Offering type
- Services
- Cost components
- Personnel, Operations, Marketing or Sales, Others
Revenue model
- Donations and Fundraising: The charity operates primarily through charitable donations, including single and monthly donations via PayPal, direct debits, cheques, and cash deposits. Gift Aid scheme allows reclaiming 25% additional tax on qualifying donations.
- Research Funding: Designated donations for research projects and clinical trials, including the MPEDS Study and other vEDS research initiatives.
Pricing tiers
| Model | Billing | Price |
|---|---|---|
| Freemium | Pay-as-you-go | Free Lifetime Membership for Vascular EDS patients and families |
Go-to-market motion2 records
Distribution channels4 records
Marketing channels6 records
Annabelle's Challenge Vascular EDS Charity product offering
Product offeringCore offering
Annabelle's Challenge is the UK's only charity dedicated exclusively to Vascular EDS (vEDS), a rare genetic connective tissue disorder. It provides free lifetime membership to genetically confirmed vEDS patients and their families, delivering personalised VEDS Emergency Packs, an information pack, counselling, a helpline, school support, support groups, retreat weekends, conferences, and research facilitation. Services span the UK, Ireland, Australia and Israel.
Product overview
Annabelle's Challenge Vascular EDS Charity operates as a unified charity platform offering comprehensive support to the vascular EDS community in the UK and internationally. The core offering centres on the Free Membership programme which provides access to the VEDS Support Programme, VEDS Information Pack, VEDS Emergency Pack, and Counselling Service. Additional services include School Support for children with vEDS, VEDS Resource Hub for information, Retreat Weekends for community connection, and Research & Clinical Trials facilitation. The charity also partners with NHS EDS National Diagnostic Service and offers exclusive MedicAlert membership discounts to members.
Differentiator
Problem solved
Functional benefit
Products and services
- Free Lifetime Membership
- VEDS Support Programme
- VEDS Information Pack
- VEDS Emergency Pack
- Counselling Service
- School Support
- Freephone Helpline
- VEDS Retreat Weekends
- VEDS Conferences
- Research & Clinical Trials Facilitation
Quantifiable outcome
- 580+ genetically confirmed patients supported
- +3 more outcomes
Companies that use Annabelle's Challenge Vascular EDS Charity
Customer profileNamed customers3 records
Segments3 records
Ideal customer profiles3 records
Annabelle's Challenge Vascular EDS Charity technology and API
TechnologyTechnology focussed No
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
Feature2 records
Annabelle's Challenge Vascular EDS Charity partnerships and signals
Strategic signalPartnerships
Twelve partnerships are on record, tiered core and minor.
- EDS UKcoreCo-funded the NEEDS (Natural history Exploration of rare EDS types) study in 2019. Collaborated on creation of one of the largest rarer type EDS research databases in the world.
- The Marfan Foundation (VEDS Movement)minorCollaborates with The Marfan Foundation on VEDS Movement and research initiatives for vascular conditions.
- NHS EDS National Diagnostic ServicecoreEstablished partnership with the NHS EDS National Diagnostic Service, a highly specialised service commissioned by NHS England for individuals and families suspected of having complex Ehlers-Danlos Syndrome. Service runs two specialist clinics at Sheffield Northern General Hospital and Northwick Park & St Mark's Hospitals in London. Collaboration on patient support, research, and care pathways.
- The EDS SocietyminorInternational collaboration with The EDS Society on research and support for Ehlers-Danlos syndromes.
- EDS Support UKcoreCollaborates with EDS Support UK on research database creation and shared initiatives for the EDS community.
- University of CambridgecoreMPEDS Study (Metabolic VEDS Research Study) conducted in partnership with the Institute of Metabolic Science, University of Cambridge. Principal Investigator Dr Agnieszka Jakubowska, overseen by Professor Sir Stephen O'Rahilly.
- MedicAlert UK & IrelandcoreOfficial partner of MedicAlert. Exclusive discount code for members providing free first-year membership worth £41.00. MedicAlert IDs provide emergency access to medical conditions, allergies, medications, and vital information.
- Horsfield & SmithminorChartered accountants and independent examiner for annual accounts and board reports.
- Fundraising RegulatorcoreRegistered with Fundraising Regulator, adhering to Code of Fundraising Practice. Commits to high standards, transparency, and accountability in fundraising activities.
- Charity CommissioncoreUK charity regulator. Registered Charity No.1157074. Must submit annual accounts and board reports. Charitable Incorporated Organisation governed by constitution dated 11th March 2014.
- Zurich InsuranceminorCharity covered by £5,000,000 Public Liability Insurance provided by Zurich.
- Information Commissioners Office (ICO)coreRegistered with ICO (Registration ZA450659) for data protection compliance.
Scale indicators6 records
Recent moves6 records
Expansion highlights4 records
Annabelle's Challenge Vascular EDS Charity competitors and assessment
Company assessmentOthers
- Contact (for families with disabled children): UK charity supporting families of children with disabilities, including rare conditions. Comparable in providing family support, information, and school support services that overlap with Annabelle's Challenge's school support offering, though with a much broader disability remit.
- MedicAlert UK & Ireland: Charity providing medical ID jewellery and emergency health information services. Strategic commercial partner of Annabelle's Challenge (free first-year MedicAlert for members). Not a direct competitor—adjacent in serving vEDS emergency preparedness needs.
Broad incumbents
- Beacon (formerly Findacure): UK charity supporting rare disease patient groups, with comparable work in building capacity for small condition-specific charities. Peer in the rare-disease non-profit ecosystem rather than competing for the same vEDS beneficiaries.
- Rare Disease UK: UK national campaign for people with rare diseases and their families. Comparable as a rare-disease support and policy organisation, but covers all rare conditions rather than focusing on a single disease like Annabelle's Challenge.
- Genetic Alliance UK: UK umbrella body for over 200 rare disease patient organisations. Annabelle's Challenge sits within this network; comparable as a rare-disease advocacy and policy voice, but operates at a meta-level rather than a single-condition focus.
Direct peers
- The Marfan Foundation (VEDS Movement): US-based non-profit focused on Marfan syndrome and related connective tissue disorders, including vEDS through the VEDS Movement. Comparable in providing patient support and research funding for a rare genetic vascular condition, though broader in scope.
- VEDS Movement (The Marfan Foundation): Dedicated vEDS programme within The Marfan Foundation, focused on awareness, education, and research. Direct US peer serving the same vEDS patient population across the Atlantic.
- Ehlers-Danlos Support UK: UK charity supporting all types of Ehlers-Danlos Syndrome, including Vascular EDS. Most direct peer: they co-fund the NEEDS research database with Annabelle's Challenge and share patient referrals, but cover a broader EDS remit rather than focusing exclusively on vEDS.
- The EDS Society: Global non-profit dedicated to EDS research, education, and patient support. Direct peer in mission; they cover all EDS types and are a research collaboration partner of Annabelle's Challenge, but operate at much larger international scale.
Regional players
- Cambridge Rare Disease Network: UK charity connecting patients, researchers, and industry in the rare disease space, with strong links to Cambridge research institutions (where Annabelle's Challenge runs the MPEDS study). Operates in an adjacent but overlapping niche.
Market position
Strengths5 records
Weaknesses5 records
Competitive moat5 records
Key risks6 records
Key highlights7 records
Customer concentration
Annabelle's Challenge Vascular EDS Charity social profiles
Digital presenceAnnabelle's Challenge Vascular EDS Charity financial estimates
Financial estimateRevenue estimate
Valuation estimate
Annabelle's Challenge Vascular EDS Charity leadership team
Management profileNumber of profiles
Profiles3 records
Annabelle's Challenge Vascular EDS Charity funding detail
Funding detailFunding overview
Funding rounds
Investors
Funding detail is available on the Subscription and Enterprise plan.Contact sales →
Annabelle's Challenge Vascular EDS Charity 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 Annabelle's Challenge Vascular EDS Charity
What does Annabelle's Challenge Vascular EDS Charity do?
Annabelle's Challenge is the UK's only charity dedicated exclusively to Vascular EDS (vEDS), a rare genetic connective tissue disorder. It provides free lifetime membership to genetically confirmed vEDS patients and their families, delivering personalised VEDS Emergency Packs, an information pack, counselling, a helpline, school support, support groups, retreat weekends, conferences, and research facilitation. Services span the UK, Ireland, Australia and Israel.
Is Annabelle's Challenge Vascular EDS Charity a public or private company?
Annabelle's Challenge Vascular EDS Charity is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was Annabelle's Challenge Vascular EDS Charity founded?
Annabelle's Challenge Vascular EDS Charity was founded in 2013. It employs 1 to 10 people.
Where is Annabelle's Challenge Vascular EDS Charity based?
Annabelle's Challenge Vascular EDS Charity is headquartered in Bury, United Kingdom, in the Europe region.
How does Annabelle's Challenge Vascular EDS Charity make money?
Two revenue lines are on record. Donations and Fundraising is the primary driver. The others are research Funding.
Who are Annabelle's Challenge Vascular EDS Charity's main competitors?
Others on record are Contact (for families with disabled children) and MedicAlert UK & Ireland. Broad incumbents are Beacon (formerly Findacure), Rare Disease UK and Genetic Alliance UK. Direct peers are The Marfan Foundation (VEDS Movement), VEDS Movement (The Marfan Foundation), Ehlers-Danlos Support UK and The EDS Society. Cambridge Rare Disease Network is listed as a regional player.
Does Annabelle's Challenge Vascular EDS Charity have an API?
No public API is recorded for Annabelle's Challenge Vascular EDS Charity.
What industry is Annabelle's Challenge Vascular EDS Charity in?
Annabelle's Challenge Vascular EDS Charity's product category is Rare Disease Patient Support. Its primary akta.pro industry code is BPAGACAM, Rare Disease & Special Needs Support Organizations, with a secondary code of BPAGACAA, Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS). Its NAICS code is 813212 and its SIC code is 8300.