What CGD Society does

CGD Society is a UK-registered charity (registered charity number 1143049, company number 07607593), founded in 1991 and headquartered in Epsom with a postal address in Dartford, that provides support, information, and advocacy for individuals and families affected by Chronic Granulomatous Disorder (CGD), a rare primary immunodeficiency affecting an estimated 4-6 people per million. The organization funds a UK-based Clinical Nurse Specialist, runs a telephone and email helpline (0800 987 8988), operates a Family Support Fund and pre-payment prescription assistance, and provides bereavement and mental health support. It also curates patient-facing resources, hosts a Medical Advisory Panel, and maintains a research portfolio that includes clinical-trial information and patient advisory panels for gene therapy developers such as Ensoma and Prime Medicine.

The charity's revenue model is donation-led: it depends on regular giving, one-time donations, corporate partnerships, an annual membership programme, branded merchandise sales via a WooCommerce webshop, and the Jeans for Genes Day fundraising campaign. Core services are provided free of charge to beneficiaries; there is no service-pricing model. Its operating technology is a standard nonprofit stack (WordPress content management, WooCommerce webshop, Google Analytics, Mailchimp newsletters) with social media presence on LinkedIn, Instagram, X, and Facebook.

CGD Society serves approximately 1,500 members worldwide, including diagnosed individuals, families, X-linked CGD carrier females, and (for clinical resources) medical professionals. It operates with a 9-employee base and is governed by a board of trustees; Josh Stevens assumed the chair role in 2024. The charity is part of the Gene People Partnership Network and receives support from the National Lottery Community Fund, with strategic research collaborations including UCL Institute of Immunity and Transplantation and Great Ormond Street Hospital on gene therapy and stem cell transplantation studies.

Name

CGD Society

Legal name

Chronic Granulomatous Disorder Society

Website

https://cgdsociety.org

Company type

Private

Operating status

Operating

Headcount range

1–10 employees

Short description

CGD Society is a UK-registered charity founded in 1991 that provides support, information, and advocacy for individuals and families affected by Chronic Granulomatous Disorder, a rare primary immunodeficiency. It funds a Clinical Nurse Specialist, runs a helpline, Family Support Fund, and research engagement with gene therapy developers.

Ownership category

akta.pro rank

Product category

Patient Advocacy / Rare Disease Charity

NAICS

Other Individual and Family Services (624190), Individual and Family Services (6241), Child and Youth Services (62411), Social Assistance (624)

SIC

Services-Social Services (8300), Services-Misc Health & Allied Services, Nec (8090)

akta.pro primary industry

Rare Disease & Special Needs Support Organizations (BPAGACAM)

akta.pro secondary industry

Family & Community Support Services (Case Management, Referrals) (EDAJAIAK)

Keywords

• Rare disease support
• Patient advocacy
• Genetic disorder charity
• Family support services
• Health charity

Headquarters

HQ city

Epsom

HQ country

United Kingdom

HQ region

Europe

Offices2 records

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Revenue model

1. Donations and Regular Giving: The CGD Society relies on regular donations from supporters to provide ongoing support services to individuals and families affected by CGD. They have a regular giving program and one-time donation options.
2. Jeans for Genes Campaign: Annual fundraising campaign that raises awareness and funds for genetic conditions in the UK.
3. Corporate Support: Partnerships with corporate entities for fundraising and support.
4. Membership: Annual membership program providing access to newsletters and community support.
5. Merchandise Sales: Webshop sales of branded merchandise through WooCommerce platform.

Go-to-market motion2 records

Distribution channels4 records

Marketing channels5 records

Core offering

The CGD Society is a UK-registered charity providing support, information, and advocacy for individuals and families affected by Chronic Granulomatous Disorder (CGD), a rare primary immunodeficiency. Its offerings include a telephone and email helpline, UK-based clinical nurse specialist services, a Family Support Fund, mental health and bereavement support, educational resources, and funding for research and clinical trials.

Product overview

CGD Society is a charitable organization providing support, information, and advocacy for individuals and families affected by Chronic Granulomatous Disorder. The organization offers a unified service portfolio centered on patient and family support, including a helpline, UK-based nursing services, family support fund, bereavement support, mental health support, and educational resources. Additional services include a research portfolio funding clinical trials and medical professional resources. The charity also operates a Jeans for Genes fundraising campaign and provides membership programs with newsletters. CGD Society does not offer a technology product platform but provides charitable services focused on support, awareness, and research funding for this rare genetic condition.

Differentiator

Problem solved

Functional benefit

Brands

• Jeans for Genes Day: Campaign that raises awareness of all genetic health conditions in the UK and raises money to fund projects for those affected by genetic conditions

Products and services

• Support Services
• Information Resources
• Research Portfolio
• Medical Professional Resources
• Family Support Fund
• Jeans for Genes Campaign
• Membership Program
• Pre-payment Prescription Service

Quantifiable outcome

• 17 pre-payment prescriptions provided to families in 2024-2025
• +3 more outcomes

Named customers3 records

Segments3 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Integration9 records

Partnerships

Five partnerships are on record, tiered core and minor.

• EnsomacoreStrategic or Co-development PartnerCGD Society partnered with Ensoma, a genomic medicines company, to support the development of gene therapy for X-linked chronic granulomatous disease (X-CGD). The charity organized a patient advisory panel of five individuals directly affected by CGD to provide balanced feedback on the ongoing clinical trial. This collaboration ensures patient voices are integrated into the clinical development process.
• Prime MedicinecoreStrategic or Co-development PartnerPrime Medicine developed PM359 prime editing programme for p47phox CGD. CGD Society maintained engagement with the company and shared community letters regarding their decision to deprioritize the CGD programme. The charity continues to monitor developments and explore partnership opportunities for PM359 continuation.
• UCL Institute of Immunity and TransplantationcoreStrategic or Co-development PartnerCollaboration with UCL on research comparing allogeneic stem cell transplantation outcomes in adults with primary immunodeficiencies including CGD. The study found that transplant outcomes were better when performed at expert centres like UCLH or Newcastle.
• Great Ormond Street Hospital (GOSH)coreStrategic or Co-development PartnerGOSH conducted pioneering gene therapy treatment on Remi, the first person in the world with p47 CGD to receive this therapy. The CGD Society celebrates this breakthrough and works with GOSH to raise awareness of treatment advances.
• Gene People Partnership NetworkminorStrategic or Co-development PartnerThe CGD Society is part of the Gene People Partnership Network, a coalition of genetic condition charities working together for greater impact.

Scale indicators5 records

Recent moves6 records

Expansion highlights6 records

Broad incumbents

• National Organization for Rare Disorders (NORD): US-based umbrella organization for rare diseases. Comparable in providing advocacy, research funding programs, and patient resource infrastructure across the rare disease space that includes CGD.
• Genetic Alliance UK: UK national alliance of over 200 patient organizations supporting people with genetic conditions. Comparable as a broader policy/advocacy incumbent that operates across the same genetic-disease ecosystem.
• Gene People: UK umbrella alliance of genetic condition charities of which CGD Society is a member. Broad incumbent that aggregates policy, awareness, and network services across many rare genetic conditions, including CGD.
• Rare Disease UK: National alliance for the rare disease community in the UK. Comparable in advocacy mission and stakeholder convening role across rare conditions including CGD, though not condition-specific.

Regional players

• British Society for Immunology: UK professional body for immunologists. Comparable as an ecosystem participant that engages medical professionals treating primary immunodeficiencies, though it serves clinicians rather than patients directly.

Direct peers

• Metabolic Support UK (formerly CLIMB): UK charity supporting patients and families affected by inherited metabolic diseases. Closely comparable operating model: small team, helpline, family support, information resources, and research engagement for a rare genetic condition.
• PID UK: UK-based primary immunodeficiency patient organization. Closest UK peer offering helpline, family support, and medical-professional resources across the same PID disease area that includes CGD.
• Immune Deficiency Foundation: US-based patient organization for primary immunodeficiencies (PIDs), including CGD. Directly comparable mission: provides patient/family support, physician education, advocacy, and research funding for the same rare immunodeficiency community.
• Jeffrey Modell Foundation: Global foundation dedicated to primary immunodeficiencies including CGD. Comparable as a charity funding research, physician education, and patient advocacy for the same disease class.

Emerging players

• Contact: UK charity supporting families with disabled children, including those with rare genetic conditions. Comparable in providing family support, helpline, and information services to a partially overlapping beneficiary population.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks6 records

Key highlights6 records

Customer concentration

• Xx.com/CGDSociety
• Facebookfacebook.com/cgdsociety
• LinkedInlinkedin.com/company/cgd-society
• Instagraminstagram.com/cgdsociety

Compliance2 records

Revenue estimate

Valuation estimate

Number of profiles

Profiles1 record

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about CGD Society