IPWSO

What IPWSO does

IPWSO (International Prader-Willi Syndrome Organisation) is an international non-profit membership charity founded in 1991 and registered in England and Wales (charity no. 1182873), headquartered in Cambridge, UK. The organisation provides information, education, advocacy, and clinical resources for the global Prader-Willi syndrome (PWS) community, serving people with PWS, their families, medical professionals, professional caregivers, and 105 member-country national PWS associations.

Its core programmatic offering is Project ECHO, a tele-education infrastructure built on the University of New Mexico's ECHO model and delivered via video conferencing, comprising five specialised tracks: Health ECHO, Leadership ECHO, Caregivers' ECHO, Mental Health ECHO, and the SPW Latino América ECHO (produced in partnership with RedLASPW). Supporting products include a Free Genetic Screening programme for individuals unable to access testing locally, an Advice Service, Medical Alerts Booklets, Consensus Documents, PWS Growth Charts, the IPWSO Academy learning platform, and an IMHN Mental Health Network. Triennial international conferences, an annual Caregivers' Conference, Family Meetings, Summit Meetings, Caregivers' Forum sessions, and Research and Clinical Trials Update Meetings extend the educational surface in-person and virtually.

IPWSO's revenue model is donations and charitable contributions, with grant programmes that redistribute funds to national associations, conferences, workshops, and individuals; all beneficiary-facing services are provided free of charge. Go-to-market is community-led through national PWS associations, professional networks, and digital channels (website, newsletter, Facebook, Instagram, YouTube, LinkedIn). The organisation is governed by a Board of Trustees and supported by advisory boards including the Clinical and Scientific Advisory Board, and is led by CEO Marguerite Hughes and President Tony Holland (Emeritus Professor of Psychiatry, University of Cambridge).

Name

IPWSO

Legal name

IPWSO (International Prader-Willi Syndrome Organisation)

Website

https://ipwso.org

Company type

Private

Founded year

1991

Operating status

Operating

Headcount range

1–10 employees

Short description

IPWSO is an international non-profit charity providing information, education, advocacy, and clinical resources on Prader-Willi syndrome to families, medical professionals, caregivers, and 105 national PWS associations worldwide, founded in 1991 and headquartered in Cambridge, UK.

Ownership category

akta.pro rank

Headquarters

HQ city

Cambridge

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, Others

Revenue model

1. Donations and Fundraising: IPWSO is a charity funded primarily through donations from individuals, families, and supporters. The organization receives funding for conferences, workshops, small projects, and individual grants through its fundraising activities.

Go-to-market motion1 record

Distribution channels3 records

Marketing channels7 records

Core offering

IPWSO is an international non-profit membership organisation that delivers free information, education, advocacy, and clinical resources to the global Prader-Willi syndrome (PWS) community. Its core offering bundles the Project ECHO® tele-education programme (specialist tracks for Health, Leadership, Caregivers, Mental Health, and Spanish-language audiences), direct support services such as Free Genetic Screening and an Advice Service, grant programmes for conferences and individuals, and a multilingual library of clinical and family-facing resources for use across 105 member countries.

Product overview

IPWSO is an international non-profit membership organization providing a comprehensive ecosystem of support, education, and advocacy services for the Prader-Willi syndrome community. The organization operates a unified platform structured around several core pillars: Project ECHO® serves as the primary tele-education infrastructure offering multiple specialized tracks (Health ECHO®, Leadership ECHO®, Caregivers' ECHO®, Mental Health ECHO®, and SPW Latino América ECHO®) that deliver video-based educational content to professionals and families worldwide; direct support services including Free Genetic Screening, an Advice Service, and grant programmes for conferences and individual needs; research facilitation through Clinical Trials Update Meetings and collaboration with pharmaceutical researchers; and community connection via Caregivers' Forum, Family Meetings, and Summit Meetings. IPWSO also distributes clinical resources including Medical Alerts Booklet, Consensus Documents, and PWS Growth Charts, plus Translated Guides for global accessibility.

Differentiator

Problem solved

Functional benefit

Products and services

• Project ECHO® Tele-Education Programme A tele-education platform connecting global PWS experts with professionals and families via video conferencing, with multiple specialised tracks (Health, Leadership, Caregivers, Mental Health, and SPW Latino América) delivering case-based learning sessions.
• Free Genetic Screening Programme that provides free genetic testing for individuals suspected of having Prader-Willi syndrome who cannot access testing in their home country.
• Advice Service Q&A service connecting parents, families, caregivers, and professionals with IPWSO experts to answer questions about PWS care and management.
• Support for Conferences, Workshops and Small Projects Grant funding programme supporting PWS-related conferences, workshops, and small projects, with scheduled application rounds (e.g., closing 31 August 2026).
• Individual Grants Financial support programme providing individual grants to people seeking resources or opportunities related to PWS care and personal development.
• International Advocacy Programme that unites the global PWS community to collectively find solutions to challenges and advocates for people with PWS and their families at international institutions and forums.
• Research Support Support service for PWS research, providing clinical trials updates, access to research papers, and collaboration with scientific and clinical researchers worldwide.
• Medical Alerts Booklet Critical medical information document for healthcare providers describing PWS-specific health risks and emergency considerations, available in multiple translated languages.
• Consensus Documents Clinical guidance documents developed by experts for doctors and healthcare professionals covering PWS diagnosis and management.
• PWS Growth Charts Specialised growth charts designed for monitoring development in children with Prader-Willi syndrome.
• Translated Guides Educational materials and articles about PWS family care and medical topics translated into multiple languages for global distribution.
• Caregivers' Forum Virtual community space for professional PWS caregivers worldwide to share practice-driven knowledge, information and support, hosting 3 online meetings annually via Zoom and issuing newsletters.
• Family Meetings Online information sessions held via Zoom on topics relevant to families of people with PWS, organised by the Famcare Board, with simultaneous interpretation in Spanish and Portuguese.
• Summit Meetings International online forum for discussing key issues relevant to people with PWS and their families, featuring expert presentations and audience participation.
• Research and Clinical Trials Update Meetings Annual event bringing together researchers, clinicians, and PWS community members to share developments in PWS research and clinical trials from pharmaceutical companies.
• Caregivers' Conference International conference series for professional PWS caregivers to share expertise and exchange practice-driven knowledge, with the 6th edition held in Berlin in 2024 and the 7th edition planned for 2027.

Named customers5 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

Integration7 records

Partnerships

Four partnerships are on record, tiered core, minor and major.

• RedLASPW (Red Latinoamericana de Síndrome de Prader-Willi)coreStrategic or Co-development PartnerRedLASPW is the Latin American Network of Prader-Willi Syndrome, collaborating with IPWSO on the SPW Latino América ECHO program. This partnership provides educational video content covering topics including diagnosis, clinical characteristics, nutrition, behaviour management, and therapy for the Spanish-speaking PWS community. The collaboration has produced over 20 expert presentations in Spanish.
• Project ECHOcoreStrategic or Co-development PartnerIPWSO uses the Project ECHO (Extension for Community Healthcare Outcomes) model developed at the University of New Mexico to deliver virtual learning programs. This partnership enables democratization of PWS expertise globally through video conferencing technology.
• Cuban Society of Human Genetics (SOCUGEN)minorChannel Partner/ Reseller/ DistributorSOCUGEN served as the local host for the 10th International PWS Conference held in Havana, Cuba in November 2019.
• Rare Diseases InternationalmajorStrategic or Co-development PartnerIPWSO collaborates with Rare Diseases International to advocate for rare diseases as an international policy priority and represents people with PWS at international institutions and forums.

Scale indicators4 records

Recent moves6 records

Expansion highlights5 records

Broad incumbents

• International Alliance of Patients' Organizations (IAPO): IAPO is a global alliance of patient organizations across disease areas focused on patient-centered healthcare advocacy. It is comparable as a non-profit membership umbrella working internationally to build patient organization capacity and influence health policy.
• European Patients' Forum (EPF): EPF is the leading European umbrella for chronic disease patient organizations, providing advocacy, capacity building, and policy representation. It is comparable as a non-profit membership umbrella organization coordinating disease-specific patient groups at a continental level.
• Genetic Alliance: Genetic Alliance is a non-profit umbrella network supporting patient organizations across genetic conditions. It is comparable to IPWSO as a convener of disease-specific patient groups delivering advocacy, capacity-building, and resources.
• EURORDIS - Rare Diseases Europe: EURORDIS is the European umbrella organization for rare disease patient organizations, analogous to IPWSO's umbrella role but at a continental scale across all rare diseases. It is comparable as a non-profit umbrella coordinating patient associations, advocating at EU institutions, and delivering cross-disease support programs.
• NORD - National Organization for Rare Disorders: NORD is the largest US rare disease umbrella organization supporting patient communities across thousands of conditions. It is comparable as a non-profit membership organization providing advocacy, education, and support resources for rare disease patient populations.
• Orphanet: Orphanet is the leading global reference portal for rare diseases and orphan drugs, providing expert-curated disease information. It is comparable as an information infrastructure provider serving the rare disease community that IPWSO also supports.

Direct peers

• Rare Diseases International: Rare Diseases International is a global alliance of rare disease patient organizations and IPWSO's direct strategic partner. It is highly comparable as a global non-profit membership umbrella advocating internationally and coordinating member associations across geographies.
• Foundation for Prader-Willi Research (FPWR): FPWR is a PWS-specific non-profit focused on funding research and clinical trials. It is directly comparable as part of the international PWS organizational ecosystem, with overlapping stakeholders in research facilitation, family engagement, and clinical community coordination.
• Prader-Willi Syndrome Association (UK) - PWSA UK: PWSA UK is the principal national PWS organization in the United Kingdom, where IPWSO is also headquartered. It is directly comparable as a PWS-focused membership and support organization providing family services, professional education, and advocacy for the same beneficiary population.
• Prader-Willi Syndrome Association (USA) - PWSA USA: PWSA USA is the largest national Prader-Willi syndrome association serving the United States. It is directly comparable as a PWS-specific patient, family, and professional support organization, with overlapping programs in family support, medical resources, advocacy, and conferences.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat5 records

Key risks5 records

Key highlights6 records

Customer concentration

• YouTubeyoutube.com/channel/UCdaADGNib1thtelhtVWx0Gg
• Facebookfacebook.com/IPWSO
• LinkedInlinkedin.com/company/ipwso
• Instagraminstagram.com/ipwso

Revenue estimate

Valuation estimate

Number of profiles

Profiles2 records

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 IPWSO