Gene People
Gene People is a UK-registered charity that runs a genetic counsellor-led helpline, a Partnership Network of 100+ genetic condition charities, fundraising events, and policy advocacy for individuals and families affected by genetic conditions.
- Company typePrivate
- Founded-
- HeadquartersEpsom, United Kingdom
- Headcount1–10
- GTM typeB2C
- OfferingServices
What Gene People does
Gene People is a UK-registered charity (Registered Charity Number 1141583), headquartered in Epsom, Surrey, that provides free support services to individuals and families affected by genetic conditions, with secondary audiences of healthcare professionals and the wider genetic-conditions charity sector. The organization was previously known as Genetic Disorders UK and rebranded to Gene People in 2022 alongside the publication of its 2022-2025 strategy.
Its core service is a genetic counsellor-led helpline — staffed by a counsellor (Emily) with 14+ years of specialized experience — delivered by telephone (0800 987 8987) and email ([email protected]) and providing confidential support, information on testing, diagnosis, family planning, and emotional guidance. Around the helpline, Gene People operates a Partnership Network of over 100 UK-based genetic condition charities and patient groups, hosts the pRxEngage clinical-trial finder for rare-condition patients, runs an annual Leadership Symposium, administers the annual Gene People Awards, and maintains a public directory of genetic condition charities plus a Beginners Guide to Genetics. Distribution and fundraising channels include London Marathon and Ultra Challenge event places, JustGiving and Virgin Money Giving fundraising pages, and shopping-donation platforms (GiveAsYouLive, EasyFundraising), payroll giving via Good PAYE, corporate giving via Benevity, and a CAF America US donor-advised-funds portal.
Gene People is funded entirely outside government or NHS grants. Reported income streams for 2024-25 include individual donations and event fundraising, corporate support from Amicus Therapeutics, Costello Medical, LifeArc, and Parexel, honoraria from Ipsen and RareMinds, and contracts with ABPI, Manchester University NHS Foundation Trust, and Genomics England Limited. The charity operates with a small team, is governed by trustees, and is led by Chief Executive Samantha Barber. No revenue figures are publicly disclosed.
Gene People firmographics
Firmographics- Name
- Gene People
- Legal name
- Gene People
- Website
- https://genepeople.org.uk
- Company type
- Private
- Operating status
- Operating
- Headcount range
- 1–10 employees
- Short description
- Gene People is a UK-registered charity that runs a genetic counsellor-led helpline, a Partnership Network of 100+ genetic condition charities, fundraising events, and policy advocacy for individuals and families affected by genetic conditions.
- Ownership category
- akta.pro rank
Gene People industry classification
Industry- Product category
- Genetic Condition Support Services
- NAICS
- Individual and Family Services (6241), Other Individual and Family Services (62419)
- SIC
- Services-Social Services (8300)
- akta.pro primary industry
- Population Genomics & Preventive Precision Health Programs (HLAAANAL)
- akta.pro secondary industry
- Genetic Counseling & Prenatal Testing Telehealth (carrier screening, NIPT counseling) (HLALAHAK)
Keywords
Where Gene People is headquartered
LocationHeadquarters
- HQ city
- Epsom
- HQ country
- United Kingdom
- HQ region
- Europe
Offices1 record
Markets served
Gene People business model
Business model- GTM type
- B2C
- Offering type
- Services
- Cost components
- Personnel, Operations, Marketing or Sales, Technology or R&D, Others
Revenue model
- Individual Donations and Fundraising: Donations from individuals, fundraising events including London Marathon, Ultra Challenge, and other sporting events. Online fundraising through JustGiving and Virgin Money Giving platforms.
- Corporate Sponsorship and Partnerships: Support from pharmaceutical and healthcare companies including Amicus Therapeutics, Costello Medical, LifeArc, and Parexel. Also honoraria from Ipsen and RareMinds. Corporate Connection program for medicines industry colleagues.
- Contract Services: Contracts with ABPI, Manchester University NHS Foundation Trust, and Genomics England Limited for specific projects and initiatives.
- Payroll Giving: Tax-effective employee giving program through Good PAYE platform, allowing UK employees to donate directly from their pay.
- No-cost Giving Platforms: Revenue from shopping partnerships with GiveAsYouLive (6,000+ companies) and EasyFundraising (8,000+ companies) where retailers donate a portion of purchases to the charity at no cost to donors.
Go-to-market motion1 record
Distribution channels6 records
Marketing channels6 records
Gene People product offering
Product offeringCore offering
Gene People operates a UK-wide genetic counsellor-led helpline and Partnership Network providing free support, information, and advocacy for individuals and families affected by genetic conditions. Core services include confidential helpline support (telephone and email), a network connecting 100+ genetic condition charities, clinical trial finder access via pRxEngage, fundraising challenge events, and an annual Leadership Symposium and awards program.
Product overview
Gene People is a UK-based charity offering a suite of support services for individuals and families affected by genetic conditions. The core services include a genetic counsellor-led Helpline providing confidential support and information, and a Partnership Network connecting genetic condition charities and patient groups. The organisation facilitates fundraising through challenge events (London Marathon, Ultra Challenge) with online fundraising page integrations through JustGiving and Virgin Money Giving. Through its website, Gene People provides access to the pRxEngage clinical trial finder for patients seeking research participation, maintains a directory of genetic condition charities and patient groups, and hosts the annual Gene People Awards and Leadership Symposium to recognise and connect the genetic conditions community.
Differentiator
Problem solved
Functional benefit
Products and services
- Gene People Helpline A genetic counsellor-led telephone and email helpline service available free throughout the UK for people with genetic conditions, their relatives, and professionals. Provides confidential, non-judgemental support including information about genetic conditions, testing, diagnosis, family planning options, and access to support services.
- Partnership Network A collaborative network for UK-based genetic condition charities and patient groups to work together as a community to increase the profile of genetic conditions. Free membership includes website listing, access to events, and consultation participation.
- pRxEngage Clinical Trial Finder Clinical trial finder platform specifically designed for people with rare conditions. Provides searchable trial profiles by condition or location, easy-to-read summaries, and assessment tools to help match patients to relevant studies.
- Gene People Leadership Symposium Annual symposium for leaders in the genetic condition community to discuss, learn, and network on topics related to genetic disorders. Open to charity and community groups, medical professionals, and industry representatives.
- Fundraising Events Challenge events including London Marathon places, Ultra Challenge Series, and other sports events for supporters to raise funds. Includes online fundraising page setup through JustGiving and Virgin Money Giving platforms.
- Genetic Condition Charities & Patient Groups Directory Comprehensive directory of genetic condition charities and patient groups in the UK, alphabetically organized from A-Z to help individuals find support for specific conditions.
Quantifiable outcome
- 1 in 17 children and adults in the UK living with life-altering rare genetic conditions supported
- +2 more outcomes
Companies that use Gene People
Customer profileNamed customers3 records
Segments3 records
Ideal customer profiles3 records
Gene People technology and API
TechnologyTechnology focussed No
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
Integration8 records
Feature1 record
Gene People partnerships and signals
Strategic signalPartnerships
16 partnerships are on record, tiered core, supporting and minor.
- pRxEngagecoreClinical trial finder partnership specifically for people with rare conditions. pRxEngage is a platform that helps patients discover research studies, search by condition or location, and access trial information. Gene People hosts the platform to give patients and families a trusted, simple way to learn about ongoing clinical trials. No payment is received by Gene People for hosting or recommending trials.
- Amicus TherapeuticssupportingPharmaceutical company providing corporate support to Gene People in 2024-25
- Costello MedicalsupportingHealthcare communications company providing corporate support to Gene People in 2024-25
- LifeArcsupportingMedical research charity providing corporate support to Gene People in 2024-25
- ParexelsupportingHealthcare research company providing corporate support to Gene People in 2024-25
- ABPIcoreContract relationship with Association of the British Pharmaceutical Industry for specific projects
- Manchester University NHS Foundation TrustcoreContract relationship for delivery of specific projects and initiatives
- Genomics England LimitedcoreContract relationship for delivery of specific projects and initiatives related to genomic medicine
- IpsenminorPharmaceutical company providing honoraria for speaking engagements or consultations
- RareMindsminorOrganization providing honoraria for educational or advisory services
- Disability Law ServicecoreCharity partnership providing free legal advice to disabled people and their families. Gene People works with this partner to support individuals with genetic conditions with legal matters.
- GiveAsYouLivesupportingOnline shopping donation platform with over 6,000 participating retailers. Shoppers can select Gene People as their charity and a portion of purchases is donated at no cost to the shopper.
- EasyFundraisingsupportingOnline shopping donation platform with over 8,000 participating retailers. Shoppers can select Gene People as their charity and a portion of purchases is donated at no cost to the shopper. Includes reminder widget feature.
- BenevitysupportingCorporate giving platform used by companies for workplace giving. Gene People is registered to receive donations through the Benevity platform.
- Good PAYEsupportingPayroll giving platform provider. Employees can donate directly from their pay with tax benefits. Gene People profile available on the platform.
- CAF AmericasupportingDonor advised funds scheme for US donors. Accepts donations up to $100,000 USD on behalf of Gene People. Administrative charge of 8% on first $100,000 USD ($80 minimum fee).
Scale indicators6 records
Recent moves6 records
Expansion highlights5 records
Gene People competitors and assessment
Company assessmentBroad incumbents
- National Organization for Rare Disorders (NORD): US-based national umbrella organisation for rare diseases offering patient advocacy, helpline, and policy work. Comparable in mission and advocacy/helpline model, but US-focused and at significantly larger scale.
- Global Genes: US-based rare-disease advocacy organisation supporting patients, caregivers, and advocates. Comparable patient-advocacy mission and resource/helpline offerings, with broader global and corporate-partnership orientation.
- EURORDIS - Rare Diseases Europe: European-level alliance of rare-disease patient organisations. Comparable mission and pan-European advocacy/helpline-style support; broader geographic scope and more policy-heavy than Gene People.
Direct peers
- SWAN UK (Syndromes Without A Name): UK charity run by Genetic Alliance UK offering information, support and networking for families of children with undiagnosed genetic conditions. Directly comparable as a UK support-and-advocacy charity for genetic conditions and a Partnership Network member.
- Contact (formerly Contact a Family): UK charity supporting families with disabled children, including those with genetic conditions. Comparable in target population (families with disabled/affected children), UK helpline-based model, and information/resource focus.
- Genetic Alliance UK: UK national alliance of over 200 charities supporting people with genetic conditions. Directly comparable to Gene People in mission (patient advocacy, policy work, support for rare/genetic conditions) and geography, and is also a member of Gene People's Partnership Network.
- Unique (Rare Chromosome & Gene Disorder Support): UK-based charity supporting families affected by rare chromosome and gene disorders. Closely comparable in target population, UK geography, family-support helpline offering, and information resources.
- Rare Disease UK: UK national campaign for people with rare diseases run by Genetic Alliance UK. Comparable as a UK rare-disease advocacy organisation focusing on policy and awareness; partially overlapping with Gene People's national policy remit.
- CLIMB (Children Living with Inherited Metabolic Diseases): UK charity providing information, support, and a helpline to families affected by inherited metabolic diseases. Comparable as a small UK support charity with helpline services for genetic-condition families.
Regional players
- Newlife the Charity for Disabled Children: UK charity supporting disabled children, many of whose disabilities have genetic causes. Comparable in UK focus, family-helpline service, equipment/grant provision, and fundraising-event model.
Market position
Strengths5 records
Weaknesses5 records
Competitive moat5 records
Key risks5 records
Key highlights7 records
Customer concentration
Gene People social profiles
Digital presenceGene People compliance and trust
Trust signalCompliance2 records
Gene People financial estimates
Financial estimateRevenue estimate
Valuation estimate
Gene People leadership team
Management profileNumber of profiles
Profiles1 record
Gene People funding detail
Funding detailFunding overview
Funding rounds
Investors
Funding detail is available on the Subscription and Enterprise plan.Contact sales →
Gene People M&A and investment
M&A and investmentM&A
Investments
M&A and investment is available on the Subscription and Enterprise plan.Contact sales →
Frequently asked questions about Gene People
What does Gene People do?
Gene People operates a UK-wide genetic counsellor-led helpline and Partnership Network providing free support, information, and advocacy for individuals and families affected by genetic conditions. Core services include confidential helpline support (telephone and email), a network connecting 100+ genetic condition charities, clinical trial finder access via pRxEngage, fundraising challenge events, and an annual Leadership Symposium and awards program.
Is Gene People a public or private company?
Gene People is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was Gene People founded?
Gene People was founded in -1. It employs 1 to 10 people.
Where is Gene People based?
Gene People is headquartered in Epsom, United Kingdom, in the Europe region.
How does Gene People make money?
Five revenue lines are on record. Individual Donations and Fundraising is the primary driver. The others are corporate Sponsorship and Partnerships, contract Services, payroll Giving and no-cost Giving Platforms.
Who are Gene People's main competitors?
Broad incumbents on record are National Organization for Rare Disorders (NORD), Global Genes and EURORDIS - Rare Diseases Europe. Direct peers are SWAN UK (Syndromes Without A Name), Contact (formerly Contact a Family), Genetic Alliance UK, Unique (Rare Chromosome & Gene Disorder Support), Rare Disease UK and CLIMB (Children Living with Inherited Metabolic Diseases). Newlife the Charity for Disabled Children is listed as a regional player.
Does Gene People have an API?
No public API is recorded for Gene People.
What industry is Gene People in?
Gene People's product category is Genetic Condition Support Services. Its primary akta.pro industry code is HLAAANAL, Population Genomics & Preventive Precision Health Programs, with a secondary code of HLALAHAK, Genetic Counseling & Prenatal Testing Telehealth (carrier screening, NIPT counseling). Its NAICS code is 6241 and its SIC code is 8300.