What PANS PANDAS UK does

PANS PANDAS UK is a UK-registered charity, founded in May 2018 by parents of children affected by PANS (Paediatric Acute-onset Neuropsychiatric Syndrome) and PANDAS (Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections), with dual registration in England & Wales and Scotland and a registered office in Warwick. The charity exists to support affected families, young people, adults, and the healthcare and education professionals who work with them, and operates as the only UK charity dedicated exclusively to these two related paediatric-onset neuropsychiatric conditions.

Its core 'products' are community support and information services rather than commercial software: monthly support groups, a Youth Board, teacher training, a resource library, webinars, and the Friends of PANS PANDAS UK recurring monthly giving programme. The flagship upcoming product is the three-day Perspectives on PANS conference scheduled for October 2026, which marks the charity's move into paid professional event delivery. Underlying technology is conventional digital infrastructure (website, webinar tools, Facebook community of 8,100+ members, video content) rather than any proprietary platform, and adult support is delivered in partnership with EXPAND.

The business model is donation-driven: individual one-off and monthly giving, community and corporate fundraising, conference ticket sales, and gift aid. The charity is led by CEO Vicky Burford and Chair Andy Koss, supported by a small staff and volunteer base, and is institutionalising its role in the UK clinical and policy landscape through the PANS PANDAS Steering Group (PPSG) with NHS England and the relevant Royal Colleges, and through House of Commons Library recognition of PANS and PANDAS in February 2026.

Name

PANS PANDAS UK

Legal name

PANS PANDAS UK

Website

https://panspandasuk.org

Company type

Private

Founded year

2018

Operating status

Operating

Headcount range

1–10 employees

Short description

UK-registered charity founded in 2018 supporting families and professionals affected by PANS and PANDAS through support groups, teacher training, advocacy, and community resources across England, Scotland, and Wales.

Ownership category

akta.pro rank

Headquarters

HQ city

Warwick

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: The charity accepts one-time and recurring donations from individuals. Regular monthly donations can be made through the Friends of PANS PANDAS UK program.
2. Conference and Event Revenue: Revenue generated from conference ticket sales for the Perspectives on PANS event, including tickets for Clinical Professionals Conference and Community Conference. Tickets are subsidized through community fundraising.
3. Fundraising Activities: The charity organizes various fundraising activities including community challenges, events, and campaigns to support its operations and initiatives.

Pricing tiers

Go-to-market motion3 records

Distribution channels6 records

Marketing channels8 records

Core offering

PANS PANDAS UK is a registered UK charity that provides information, peer support, advocacy, and training for individuals and families affected by PANS and PANDAS, as well as awareness and education for healthcare and education professionals. Its sellable offerings include community support groups, an annual Perspectives on PANS Conference, a teacher training programme, expert webinars, a youth board programme, and donor / regular-giving programmes such as Friends of PANS PANDAS UK.

Product overview

PANS PANDAS UK operates as a charitable organization offering a unified platform of support services for individuals and families affected by PANS (Paediatric Acute-onset Neuropsychiatric Syndrome) and PANDAS (Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections). The organization's core offerings include the 'Perspectives on PANS' annual conference (featuring Research Symposium, Clinical Professionals Conference, and Community Conference tracks), the 'Friends of PANS PANDAS UK' monthly giving programme, community support groups (regional in-person, virtual Zoom chats, and private Facebook groups), CPD-accredited teacher training, expert webinars, a Youth Board programme, Welcome Tours for new families, and a comprehensive Resource Library. The charity also maintains a PANS Physicians' Network for clinical professionals and operates an online shop. These services work together to provide awareness, education, community support, and advocacy for better healthcare outcomes for those affected by these neuropsychiatric conditions.

Differentiator

Problem solved

Functional benefit

Brands

• Friends of PANS PANDAS UK: A regular giving/membership program where donors can become monthly supporters of the charity
• Perspectives on PANS

Products and services

• Perspectives on PANS Conference Annual UK conference that brings together families affected by PANS/PANDAS, clinicians, and researchers for talks, workshops, and community networking. Tickets are typically offered on a pay-what-you-can basis.
• Community Support Groups Peer-led support groups (online and in-person) for families, young people, and adults affected by PANS/PANDAS, providing shared experience and signposting.
• Teacher Training Programme Training programme for school staff, SENCOs, and education professionals on recognising and supporting pupils affected by PANS/PANDAS.
• Friends of PANS PANDAS UK Regular-giving / membership-style donor programme through which supporters provide recurring financial contributions to fund the charity's work.
• Expert Webinars Online educational webinars featuring clinicians and other experts, providing information on PANS/PANDAS for families and professionals.
• Youth Board Youth participation programme that enables young people affected by PANS/PANDAS to contribute to the charity's work, advocacy, and resources.
• Glitch Comic Educational comic resource designed to explain PANS/PANDAS to children, families, and schools in an accessible format.

Quantifiable outcome

• 8,100 parents and carers reached through Facebook support group
• +2 more outcomes

Named customers2 records

Segments5 records

Ideal customer profiles1 record

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Integration9 records

Partnerships

Eleven partnerships are on record, tiered core and minor.

• EXPANDcoreStrategic or Co-development PartnerEuropean patient advocacy organization providing resources and support for adults with PANS and PANDAS. EXPAND is the recommended partner for adult-specific support as PANS PANDAS UK works on developing its own adult resources.
• Sunshine SupportminorStrategic or Co-development PartnerCollaboration with Kelly Jarvis from Sunshine Support to create resources and webinar for families facing Fabricated or Induced Illness (FII) allegations. Jointly authored guide for social work, healthcare and education professionals.
• Taming OliviaminorStrategic or Co-development PartnerCreative mental health space that collaborated with the Youth Board to create the 'Glitch' comic and sticker set for children and young people with PANS and PANDAS.
• British Paediatric Neurology AssociationcoreStrategic or Co-development PartnerRepresented on the PANS PANDAS Steering Group (PPSG) working to improve standards of care for people affected by PANS and PANDAS in the UK.
• Royal College of PsychiatristscoreStrategic or Co-development PartnerRepresented on the PANS PANDAS Steering Group (PPSG) collaborating on clinical guidelines and treatment pathways.
• Royal College of Paediatrics and Child HealthcoreStrategic or Co-development PartnerRepresented on the PPSG and supporting the development of UK clinical guidelines for PANS and PANDAS.
• Royal College of NursingcoreStrategic or Co-development PartnerRepresented on the PANS PANDAS Steering Group contributing to healthcare professional resources and guidelines.
• Royal College of Occupational TherapycoreStrategic or Co-development PartnerRepresented on the PPSG working on care standards for PANS and PANDAS patients.
• British Paediatric Allergy, Infection and Immunology GroupcoreStrategic or Co-development PartnerRepresented on the PPSG contributing expertise in immunology and infectious diseases relevant to PANS and PANDAS.
• Royal College of General PractitionerscoreStrategic or Co-development PartnerRepresented on the PPSG to help improve GP awareness and understanding of PANS and PANDAS.
• British Association of Social WorkerscoreStrategic or Co-development PartnerRepresented on the PPSG contributing to social care aspects of PANS and PANDAS support and guidance.

Scale indicators4 records

Recent moves6 records

Expansion highlights6 records

Direct peers

• Cerebra: UK charity for children with brain-related neurological conditions. Comparable as a condition-specific UK charity combining family support, professional guidance, and policy advocacy for paediatric neuro conditions.
• Epilepsy Action: UK condition-specific health charity providing support, information, and advocacy for people affected by epilepsy. Closely comparable in scale and operating model: community support, professional training, helpline services, and policy work for a specific neurological condition.
• EXPAND: European patient advocacy organization providing resources and support for adults with PANS and PANDAS. Designated as the recommended adult-support partner for PANS PANDAS UK, making it the most directly comparable peer operating in the same condition space.
• Contact: UK charity supporting families with disabled children. Comparable as a family-focused UK charity providing peer support, information resources, and advocacy for parents and carers of children with complex conditions.

Broad incumbents

• The Children's Trust: UK charity for children with brain injury and neurodisability. Comparable in serving families of children with acquired neurological conditions through information, support services, and professional training programmes.
• Mind: UK mental health charity. Comparable as a large UK advocacy charity combining community support, professional training, and policy engagement — analogous to PANS PANDAS UK's blended model but at vastly greater scale.
• YoungMinds: UK charity focused on children and young people's mental health. Comparable as a UK-based youth mental health advocacy and support charity with parallel community-support, family-resource, and policy-advocacy functions.
• National Autistic Society: Major UK charity for autism — a similarly recognized-but-contested neurodevelopmental condition. Comparable in operating model: family support, professional training, education outreach, and policy advocacy at scale.
• WellChild: UK charity for seriously ill children. Comparable in providing family support, professional resources, and advocacy within UK paediatric health — overlapping with PANS PANDAS UK's parent-and-family support mission.

Regional players

• AWARE (UK mental health charity): UK/NI-based mental health support and advocacy charity. Comparable in operating model (support groups, professional education, public awareness) but operating primarily in Northern Ireland rather than competing directly in PANS PANDAS UK's core UK geography.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks6 records

Key highlights7 records

Customer concentration

• YouTubeyoutube.com/channel/UCJjrVu8rMnYtzGjmkzO5N_g
• Facebookfacebook.com/groups/189721514954497
• LinkedInlinkedin.com/company/pans-pandas-uk

Revenue estimate

Valuation estimate

Number of profiles

Profiles1 record

Funding overview

Funding rounds

Investors

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M&A

Investments

M&A and investment is available on the Subscription and Enterprise plan.Contact sales →

Frequently asked questions about PANS PANDAS UK