PoTS UK

What PoTS UK does

PoTS UK is a registered UK charity (Charity Commission number 1159813) dedicated to supporting people affected by Postural Tachycardia Syndrome. Founded in 2010 as a Facebook group by patients Lorna Nicholson and Susan Whitfield, the organisation was formally constituted in 2015 and has grown into an internationally recognised patient advocacy body led by Prof Lesley Kavi as Chairperson. It serves two principal customer segments: (1) PoTS patients and their families seeking peer connection, symptom management resources, and patient stories, and (2) healthcare professionals — GPs, cardiologists, nurses, physiotherapists, occupational therapists, and others — who diagnose and treat the condition. Secondary audiences include policymakers and NHS bodies it engages through parliamentary advocacy.

The charity's core product set comprises online peer support groups (weekly Zoom sessions including regional groups for Northern Ireland, Scotland, and Wales), a 13-part educational video programme produced with Dr Boon Lim, downloadable leaflets, an annual Masterclass for healthcare professionals, a Healthcare Professional subscription, webinars, in-person peer support events, and a branded merchandise shop. Underlying technology is non-proprietary: a WordPress site with WooCommerce e-commerce, YouTube for video distribution, Zoom for live peer support, and standard social media platforms (Facebook, Instagram, TikTok, X). The organisation holds PIF Tick Trusted Information Creator certification and co-produced the UK's first medical textbook on PoTS.

PoTS UK is donation-funded with ancillary revenue from healthcare professional and patient membership subscriptions, Masterclass catch-up content sales (£25 per purchase), branded merchandise, and subsidised event tickets (£5 per attendee). It operates as a virtual organisation with no disclosed office, runs on a small admin team (Charity Secretary and Charity Administrator since 2019 and 2021 respectively) plus a volunteer trustee board, and uses donations platform Give as you Live for supporter fundraising. The charity does not accept corporate industry sponsorship and does not engage in door-to-door, street, or telephone fundraising.

Name

PoTS UK

Legal name

PoTS UK

Website

https://potsuk.org

Company type

Private

Founded year

2015

Operating status

Operating

Headcount range

1–10 employees

Short description

PoTS UK is a UK-registered charity providing peer support, evidence-based education, and parliamentary advocacy for patients with Postural Tachycardia Syndrome and the healthcare professionals who treat them.

Ownership category

akta.pro rank

Headquarters

HQ city

London

HQ country

United Kingdom

HQ region

Europe

Offices1 record

Markets served

GTM type

B2B and B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Technology or R&D, Others

Revenue model

1. Donations: PoTS UK relies on charitable donations from supporters. The website prominently features a 'Donate' button and the organisation has never and will never engage in door-to-door fundraising, street fundraising, or telephone fundraising.
2. Membership Subscriptions: The charity offers membership/subscription options for both patients and healthcare professionals, providing them with news, information about research, patient meetings, and fundraising projects.
3. Educational Content Sales: Sale of recorded masterclass content for healthcare professionals. The 2026 Masterclass catch-up recordings are priced at £25 for purchase.
4. Merchandise Shop: The charity operates a shop selling branded merchandise including t-shirts (unisex), travel mugs, pencil cases/purses, and notebooks to raise awareness and funds.

Pricing tiers

Go-to-market motion3 records

Distribution channels5 records

Marketing channels10 records

Core offering

PoTS UK is a UK-registered charity (Charity Number 1159813) that provides evidence-based information, peer support, healthcare professional education, and policy advocacy for people affected by Postural Tachycardia Syndrome (PoTS). The charity delivers online and in-person peer support groups, a multi-part patient educational video programme, downloadable information leaflets, webinars, and a healthcare professional masterclass series. It also operates a healthcare professional subscription, branded merchandise shop, and parliamentary engagement work to influence policy affecting PoTS patients.

Product overview

PoTS UK is a UK-based charity offering a unified portfolio of support services and educational resources for people affected by Postural Tachycardia Syndrome. The core offerings include Online Peer Support Groups for patient community connection, an Educational Programme for People with PoTS (a 13-part video series), downloadable leaflets and resources, and a Shop selling branded merchandise. For healthcare professionals, PoTS UK provides a Healthcare Professional Subscription, annual Masterclass events, webinars, and access to clinical guidelines. The organization also hosts in-person peer support events across the UK. All services are designed to improve awareness, diagnosis, and management of PoTS while reducing isolation for patients.

Differentiator

Problem solved

Functional benefit

Products and services

• PoTS UK Online Peer Support Groups Regular online peer-led support meetings delivered via video conferencing for people living with PoTS, their families, and carers. Open to free patient members of the charity, providing a moderated space to share experiences and reduce isolation.
• PoTS UK Educational Programme (13-part video series) A structured 13-part educational video programme designed for people with PoTS and their families, covering core topics on understanding, diagnosing, and self-managing the condition. Available to patient members of the charity.
• PoTS UK Masterclass Specialist educational masterclass event for healthcare professionals treating PoTS patients, delivering advanced clinical content from leading PoTS clinicians. Recordings of the masterclass are made available for separate purchase.
• Healthcare Professional Subscription Paid annual subscription product for clinicians, GPs, specialists, nurses, and physiotherapists that gives access to PoTS-specific clinical resources, reference material, and recorded educational content.
• PoTS UK Webinars Live and recorded educational webinars featuring clinicians, researchers, and patient speakers, covering diagnosis, treatment, and self-management of PoTS for the patient and clinician community.
• In-Person Peer Support Events Regional in-person peer support meet-ups and gatherings across the UK, providing face-to-face community for people affected by PoTS, complementing the online peer support offer.
• PoTS UK Shop (Branded Merchandise and Resources) Online shop selling branded PoTS UK merchandise (such as awareness items) and printed/digital resources, with revenue used to support the charity's activities.

Quantifiable outcome

• 230 doctors, 70 nurses, 60 physiotherapists, 30 occupational therapists educated at single Masterclass event
• +2 more outcomes

Named customers3 records

Segments4 records

Ideal customer profiles2 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Seven partnerships are on record, tiered minor, support and core.

• Long Covid KidsminorStrategic or Co-development Partner · 1 May 2026Partner charity that attended PoTS UK Masterclass 2026 and shared valuable insights into associated conditions commonly seen alongside PoTS.
• Long Covid SupportminorStrategic or Co-development Partner · 1 May 2026Partner charity that attended PoTS UK Masterclass 2026 and shared valuable insights into associated conditions commonly seen alongside PoTS.
• Mast Cell ActionminorStrategic or Co-development Partner · 1 May 2026Partner charity that attended PoTS UK Masterclass 2026 and shared valuable insights into associated conditions commonly seen alongside PoTS.
• Heart Stroke ScotlandminorStrategic or Co-development Partner · 1 July 2022Collaborated with Heart Stroke Scotland on the Scottish Parliament petition (PE1952) calling for improved services for people with dysautonomia. Worked together to challenge Scottish Government and NHS Scotland's claims about existing services.
• Smart Health SolutionssupportOthersProvides administrative support to PoTS UK. Located at the supporters page with logo display indicating ongoing operational support relationship.
• Creative StreamcoreTechnology or IntegrationWebsite design, hosting, and mailing system provider for PoTS UK. Developed the charity's WordPress website with WooCommerce integration, accessibility widget, and cookie management. Ongoing technical support relationship.
• Give as you LiveminorChannel Partner/ Reseller/ DistributorCharity fundraising platform partner allowing supporters to raise funds for PoTS UK through everyday online shopping.

Scale indicators6 records

Recent moves6 records

Expansion highlights5 records

Direct peers

• Mast Cell Action: UK charity supporting patients with Mast Cell Activation Syndrome, which frequently co-occurs with PoTS. Already a formal partner of PoTS UK at Masterclass 2026 and operates an identical patient-education/advocacy model.
• Dysautonomia International: US-based non-profit dedicated to autonomic disorders including PoTS. Operates a clinician education programme, patient registry, and annual conference — directly analogous to PoTS UK's UK footprint.
• Ehlers-Danlos Support UK: UK charity for people with hypermobility and Ehlers-Danlos syndromes, which have high PoTS co-morbidity. Closely comparable small UK charity delivering peer support, clinician education, and NHS advocacy.
• STARS (Syncope Trust And Anaphylaxis Scheme): UK registered charity supporting people with syncope, reflex anoxic seizures, and related autonomic dysfunction including PoTS. Most directly comparable UK peer in mission, audience, and operating model.

Broad incumbents

• Versus Arthritis: Major UK chronic-condition charity combining patient support, healthcare-professional training, and policy advocacy. Provides a benchmark for the operating model a mature PoTS UK could evolve into.
• British Heart Foundation: Large UK cardiovascular charity whose clinical research, patient information, and NHS advocacy overlap with PoTS, since PoTS is a cardiovascular/autonomic condition. Comparable clinician-education and patient-information capabilities at a much larger scale.
• ME Association: UK charity supporting people with ME/CFS, a condition with overlapping symptoms and patient population with PoTS. Comparable information, advocacy, and peer-support operating model in a related chronic-fatigue space.
• The Migraine Trust: Established UK health charity delivering patient information, peer support, and clinician education for a chronic neurological condition. Comparable operating model and clinician-facing content franchise, at significantly greater scale.

Emerging players

• Long Covid Kids: UK charity supporting children with Long Covid. Co-presented at PoTS UK Masterclass 2026; serves a related audience and operates a comparable small-charity patient-advocacy model.
• Long Covid Support: UK charity supporting people with Long Covid, a population in which PoTS is prevalent. Partnered with PoTS UK at Masterclass 2026 and addresses an overlapping clinical and patient audience.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks6 records

Key highlights6 records

Customer concentration

• Xtwitter.com/Ukpots
• YouTubeyoutube.com/channel/UCDeLE-sXCq8bno_J3P-9dfw
• Facebookfacebook.com/PoTSUKCharity
• Instagraminstagram.com/potsuk
• TikToktiktok.com/@pots.uk

Compliance1 record

Revenue estimate

Valuation estimate

Number of profiles

Profiles14 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 PoTS UK