Paget's Association

What Paget's Association does

The Paget's Association is a UK registered charity founded in 1973 that operates as the only UK organisation exclusively dedicated to Paget's Disease of Bone. It serves three principal constituencies: diagnosed patients (primarily adults over 55), their families and carers, and health and research professionals in metabolic bone disease. Core services include the Specialist Nurse Helpline, Zoom-based Virtual Support Groups operating across five countries, the Paget's Buddies one-to-one peer support scheme, free in-person information events across UK regions, the Paget's News magazine, downloadable booklets, and information videos. The charity also accredits Centres of Excellence at UK NHS hospitals and universities, provides research grants, student bursaries and educational awards, and acts as a co-funder of academic research with bodies such as the Wellcome Trust, the Michael Davie Research Foundation and the University of Nottingham.

The organisation's "technology" stack is non-proprietary and content-led: a CMS-driven website, Zoom for virtual support group delivery, YouTube for educational video, social media presence across Facebook, X, Instagram and LinkedIn, and Stripe and PayPal for donations. There is no mobile app, public API, software product, or disclosed AI/ML capability. Operations are run by six staff based at Jactin House, 24 Hood Street, Ancoats, Manchester, supported by a Board of Trustees, patrons (Sir Henry Paget and Recardo Patrick), and an academic leadership bench led by Chair Professor Stuart Ralston and Honorary President Professor Graham Russell.

Revenue is generated through donations and legacies, annual membership subscriptions, a capped monthly raffle (200-member maximum at £5 per number, prizes of £100/£50 doubled in June and December), London Marathon commitment places (£100 registration plus £1,500 minimum fundraising per runner), corporate supporters and grants from research foundations. As a charity registered with the Charity Commission for England and Wales (No. 266071), the entity does not disclose detailed financials in the source material; operations have been continuous for over fifty years, with the 50th Anniversary celebrated in 2023.

Name

Paget's Association

Legal name

The Paget's Association (also known as The National Association for the Relief of Paget's Disease)

Website

https://paget.org.uk

Company type

Private

Founded year

1973

Operating status

Operating

Headcount range

1–10 employees

Short description

The Paget's Association is a UK registered charity founded in 1973 dedicated exclusively to Paget's Disease of Bone, serving patients, families and clinicians through a Nurse Helpline, virtual and in-person support groups, accredited Centres of Excellence and research funding, funded by donations, memberships and fundraising.

Ownership category

akta.pro rank

Product category

Patient support services for Paget's Disease of Bone

NAICS

Voluntary Health Organizations (813212), Individual and Family Services (6241), Other Individual and Family Services (624190)

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 industry

Family Caregiver Coaching, Education & Support (HSABAIAI)

Keywords

• Paget's disease support
• Bone disease charity
• Patient support services
• Rare disease research
• Specialist nurse helpline

Headquarters

HQ city

Manchester

HQ country

United Kingdom

HQ region

Europe

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Others

Revenue model

1. Donations and Legacies: The charity relies solely on donations, fundraising activities, and legacies from supporters to fund its operations and mission.
2. Raffle: Monthly raffle with maximum 200 members. First prize £100, second prize £50 (doubled in June and December to £200 and £100). Entry costs £5 per number each month.
3. Raffle Gift Certificates: Gift certificates for 6 or 12 months' entry into the Paget's Association Raffle, providing a charitable gift option.
4. Membership: Annual membership providing access to online information pack, Paget's News magazine, and member benefits.

Pricing tiers

Go-to-market motion2 records

Distribution channels4 records

Marketing channels7 records

Core offering

Paget's Association is a UK-registered charity (No. 266071) founded in 1973 that supports people affected by Paget's Disease of Bone through a specialist Paget's Nurse Helpline, virtual and in-person support groups, a peer-support "Buddies" programme, information events, the Paget's News magazine, downloadable information booklets, educational awards and bursaries, and a network of Centres of Excellence. It also funds Paget's-related research and professional education. Free services are delivered primarily to individual patients and families, with funding from donations, memberships, legacies, raffles and fundraising.

Product overview

The Paget's Association operates as a UK charitable organization offering a unified portfolio of patient support and information services for those affected by Paget's Disease of Bone. Core offerings include the Nurse Helpline staffed by a Registered Nurse, Virtual Support Groups via Zoom, and in-person Information Events across the UK. Members receive the Paget's News Magazine and access to downloadable information resources including booklets on investigations, pain management, and surgery. The Association also operates a Paget's Buddies one-to-one support scheme and accredits Centres of Excellence at UK hospitals. Fundraising activities include the PagetAlert campaign (£75,000 target for diagnosis awareness) and a monthly Raffle with prizes up to £200. Research funding is provided through educational awards and bursaries for students and researchers.

Differentiator

Problem solved

Functional benefit

Products and services

• Paget's Nurse Helpline Free telephone helpline staffed by the charity's Specialist Paget's Nurse, providing disease information, advice and support to people with Paget's Disease of Bone and their families.
• Virtual Paget's Support Groups Online (virtual) peer-support groups that connect UK patients affected by Paget's Disease of Bone with each other and with the charity's staff.
• In-person Paget's Support Groups In-person peer-support group meetings bringing together UK patients and families affected by Paget's Disease of Bone.
• Paget's Buddies One-to-one peer-support 'Buddies' programme that matches individuals affected by Paget's Disease of Bone for mutual support and shared experience.
• Paget's News Magazine Regular charity magazine providing news, research updates, patient stories and information on Paget's Disease of Bone, distributed to members and supporters.
• Paget's Information Booklets Downloadable information booklets providing factual, condition-specific information on Paget's Disease of Bone for patients, families and professionals.
• Information Events Educational and information events for patients, families and healthcare professionals covering Paget's Disease of Bone management and research.
• Educational Awards and Bursaries Awards and bursaries funded by the Association to support education, training and professional development related to Paget's Disease of Bone.
• Centres of Excellence Network of Centres of Excellence designated by the Association as specialist clinical centres for the diagnosis and management of Paget's Disease of Bone.
• Membership Annual membership scheme giving supporters access to Paget's News magazine and other member benefits while supporting the charity's work.
• Fundraising Raffle Charity fundraising raffle used to generate unrestricted income to support the Association's patient services and research activities.

Quantifiable outcome

• 45% of patients report over 3 years to diagnosis; 20% wait over 5 years for diagnosis
• +2 more outcomes

Named customers1 record

Segments3 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Integration4 records

Feature2 records

Partnerships

Five partnerships are on record, tiered minor and core.

• Lincolnshire Gliding ClubminorOthers · 1 January 2025Venue for fundraising gliding challenge conducted by Specialist Nurse Diana Wilkinson, who raised £1,049 for the charity through the challenge.
• European Calcified Tissue Society and Bone Research SocietyminorStrategic or Co-development Partner · 1 January 2023Partnered for international conference in April where Centre of Excellence awards were presented to successful applicants.
• Norton Priory MuseumcoreStrategic or Co-development Partner · 1 January 2017Research partnership for medieval Paget's disease study. The museum's collection of medieval skeletons from Cheshire provided bones for molecular analysis that revealed an ancient form of Paget's disease. Research published in PNAS and funded by Paget's Association, Wellcome Trust, and Michael Davie Research Foundation.
• University of NottinghamcoreStrategic or Co-development Partner · 1 January 2017Coordinating institution for the Norton Priory medieval Paget's research. Professor Rob Layfield serves as Chair of the Paget's Association's Research Subcommittee and leads research at Nottingham's Paget's Association Centre of Excellence (PACE).
• Norfolk and Norwich University Hospital NHS Foundation TrustcoreStrategic or Co-development Partner · 1 January 2015Awarded Paget's Association Centre of Excellence status in 2015, recognising outstanding contributions to both research into Paget's disease and patient care. Professor William Fraser was Director of the centre.

Scale indicators6 records

Recent moves6 records

Expansion highlights6 records

Broad incumbents

• Arthritis Foundation: Largest US nonprofit covering arthritis and related bone/joint diseases, with comparable programs of patient support helplines, research grants, and Centres of Excellence-equivalent accreditation. Demonstrates scale benchmarks for an analogous disease-specific nonprofit.
• International Osteoporosis Foundation: Global NGO addressing osteoporosis and related bone diseases, with patient information, professional education, and research advocacy. Comparable international footprint and structure for bone-disease voluntary health organizations.
• National Osteoporosis Foundation (Bone Health & Osteoporosis Foundation): US voluntary health organization focused on a related metabolic bone disease, providing helplines, clinical guidelines, and research grants. Comparable operating model for a single-disease bone charity at greater scale.
• Versus Arthritis: UK musculoskeletal charity with a much larger footprint offering patient support, research funding, and professional education across many bone/joint conditions including Paget's-adjacent rheumatologic diseases. Peer in operating model and donor market but addresses a wider category.

Direct peers

• Royal Osteoporosis Society: UK charity dedicated exclusively to a specific bone disease (osteoporosis), with the same model of patient support, professional education, research funding, and donation-led revenue. Closest comparable in mission, scope, and operating geography.
• Bone Research Society: UK professional society for bone research that has partnered with the Paget's Association on international conferences and Centre of Excellence awards. Direct peer in the Paget's/bone-disease research ecosystem and a frequent co-marketing partner.
• European Calcified Tissue Society: European scientific society focused on calcified tissues and bone, which co-partnered with the Paget's Association on international Paget's conferences. Direct peer in Paget's research coordination and professional education.

Emerging players

• Genetic Alliance UK: UK alliance of charities supporting people affected by genetic and rare conditions. Peer in rare-disease patient advocacy infrastructure, peer support, and information service delivery applicable to Paget's.
• Rare Diseases UK: UK campaign group for people with rare diseases, providing information, advocacy, and policy representation. Adjacent peer addressing the same overarching rare-disease market and policy environment in which Paget's sits.

Others

• British Society for Rheumatology: UK professional society for rheumatology that aligns with the Paget's clinical audience and provides clinical guidelines and education. Comparable stakeholder for professional outreach, research dissemination, and clinician engagement relevant to Paget's.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat5 records

Key risks6 records

Key highlights6 records

Customer concentration

• Xx.com/PagetsDisease
• Facebookfacebook.com/PagetsAssociation
• LinkedInlinkedin.com/company/the-paget's-association
• Instagraminstagram.com/pagetsassociation

Revenue estimate

Valuation estimate

Number of profiles

Profiles8 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Paget's Association