FOP Friends

What FOP Friends does

FOP Friends is a United Kingdom-based non-profit organization founded in 2012, headquartered in Sale, Cheshire. The "FOP" designation in its name indicates a focus on Fibrodysplasia Ossificans Progressiva, an extremely rare genetic connective tissue disorder, and the organization is positioned to serve the UK patient and caregiver community affected by this condition. With 16 employees, FOP Friends operates as a small, mission-driven entity whose activities would typically include patient support, community building, awareness campaigns, and fundraising for research into the disease.

No substantive information was available in the source data regarding specific programs, products, services, revenue model details, partnerships, leadership, or technology stack. The organization's primary website content was not accessible (returning only a loading/verification page), and no products, services, app presence, certifications, or notable partnerships were disclosed. As a non-profit, its revenue model is implicitly donation- and grant-based rather than commercial, though no specific fundraising totals, donor bases, or grant sources were disclosed. Customer segments, geographic reach beyond the UK, and operational status indicators were not available in the provided inputs.

Name

FOP Friends

Website

https://fopfriends.com

Company type

Private

Headcount range

11–50 employees

Short description

FOP Friends is a UK-based non-profit founded in 2012 in Sale, Cheshire, dedicated to supporting the Fibrodysplasia Ossificans Progressiva (FOP) patient and caregiver community through advocacy, awareness, and fundraising activities.

Ownership category

akta.pro rank

Product category

Rare Disease Patient Advocacy

NAICS

Other Individual and Family Services (624190), Other Individual and Family Services (62419)

SIC

Services-Social Services (8300)

akta.pro primary industry

Disability Services & Independent Living Support (BPAGACAG)

Keywords

• Rare disease support
• Patient advocacy
• Medical research charity
• Genetic disorder nonprofit
• Community support services

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales

Core offering

FOP Friends is a UK-based non-profit organisation founded in 2012 that supports individuals and families affected by Fibrodysplasia Ossificans Progressiva (FOP), a rare genetic condition. The organisation operates with a small team of 16 employees based in Sale, Cheshire, and engages in advocacy, community building, and support activities for the FOP community.

Differentiator

Problem solved

Functional benefit

Ideal customer profiles2 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Recent moves1 record

Expansion highlights2 records

Regional players

• Contact (for families with disabled children): UK charity supporting families of children with disabilities and rare conditions. Comparable in mission and beneficiary profile (families affected by serious rare conditions) and as a UK nonprofit offering support, advice, and community to a related population.
• Muscular Dystrophy UK: UK charity focused on a group of rare neuromuscular conditions. Comparable as a UK-based disability and rare-condition charity of similar operational scale, providing patient support and research funding in an adjacent disease category.

Broad incumbents

• National Organization for Rare Disorders (NORD): US-based umbrella organization for all rare diseases. Comparable to FOP Friends as a broader incumbent in the rare-disease advocacy space, offering overlapping capabilities (patient support, policy advocacy, research funding) but at a vastly larger scale and across hundreds of conditions.
• EURORDIS - Rare Diseases Europe: European-level alliance representing rare-disease patient organizations. Comparable as a regional incumbent that both supports and partially overlaps with single-disease charities like FOP Friends in advocating for rare-disease patients across Europe.

Emerging players

• Genetic Alliance UK: UK alliance of genetic and rare-condition support groups. Comparable as a fellow UK nonprofit working on rare-disease patient advocacy and policy, with partial overlap in supporting families affected by genetic conditions like FOP.
• CLIMB (Children Living with Inherited Metabolic Diseases): UK charity supporting children and families affected by inherited metabolic diseases. Comparable as a small UK nonprofit focused on a defined rare-disease population, with overlapping services such as family support, information, and research advocacy.

Direct peers

• International Fibrodysplasia Ossificans Progressiva Association (IFOPA): The global patient organization dedicated to FOP. IFOPA is the most directly comparable peer because both organizations serve the same ultra-rare FOP community with research funding, family support, and awareness, differing mainly in geographic remit (global vs. UK).
• Brittle Bone Society: UK charity dedicated to a single rare condition (Osteogenesis Imperfecta). Highly comparable in structure and mission: a small UK nonprofit serving one ultra-rare disease community with patient support and research funding.

Market position

Strengths3 records

Weaknesses3 records

Competitive moat2 records

Key risks4 records

Key highlights4 records

Customer concentration

• LinkedInlinkedin.com/company/fopfriends

Revenue estimate

Valuation estimate

Number of profiles

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 FOP Friends