What SOFT UK does

SOFT UK (Support Organisation for Trisomy 13/18) is a UK-registered charity founded in 2005 that provides information, peer support, and community connection to families affected by Trisomy 13 (Patau syndrome) and Trisomy 18 (Edwards syndrome). The organization operates across England, Wales, Scotland, and Northern Ireland under dual registration with the Charity Commission for England and Wales (1002918) and OSCR for Scotland (SC043341), with a registered office in Glasgow. Its service portfolio spans a confidential helpline (0300 102 7638), closed Facebook support groups segmented by family situation and region, monthly Zoom support calls, in-person Family Day events, family story podcasts distributed via Spotify, educational resources, healthcare professional training webinars, and remembrance services.

The underlying technology is entirely built on commodity third-party platforms rather than proprietary systems: a Squarespace-hosted website, Mailchimp for email, Zoom for group video calls, JustGiving and Eventbrite for fundraising and ticketing, and Facebook groups as the primary community infrastructure. There is no proprietary software product or platform; SOFT UK's "product" is human-delivered community support and content. The charity employs four part-time staff members, supported by a network of volunteer peer contacts and regional representatives such as the Northern Ireland Representative (Emma Carter).

SOFT UK's revenue model is donation-based rather than transactional. All services are provided free of charge to beneficiaries, and the charity is funded through community fundraising, individual donations via JustGiving, event-based fundraising (marathons, step challenges, craft fairs), seasonal campaigns (Summer of Support, Trisomy Awareness Month in March, Giving Tuesday), and occasional institutional grants (e.g., The National Lottery). It is governed by a Board of Trustees with no parent company or institutional investment. In the first half of 2026, the organization reported reaching 931,103 people across digital channels and hosted 20+ families at Family Day events.

Name

SOFT UK

Legal name

Support Organisation for Trisomy 13/18 (SOFT UK)

Website

https://soft.org.uk

Company type

Private

Founded year

2005

Operating status

Operating

Headcount range

1–10 employees

Short description

SOFT UK is a UK-registered charity founded in 2005 that provides free peer support, information, and community services to families affected by Trisomy 13 and Trisomy 18 across England, Wales, Scotland, and Northern Ireland, operating with four part-time staff.

Ownership category

akta.pro rank

Product category

Family Support Services (Rare Genetic Conditions Charity)

NAICS

Individual and Family Services (6241), Services for the Elderly and Persons with Disabilities (62412), Services for the Elderly and Persons with Disabilities (624120), Child and Youth Services (624110), Other Individual and Family Services (624190)

SIC

Services-Social Services (8300), Services-Health Services (8000), Services-Misc Health & Allied Services, Nec (8090)

akta.pro primary industry

Rare Disease & Special Needs Support Organizations (BPAGACAM)

akta.pro secondary industries

Disability Services & Assistive Solutions (Accessibility, Assistive Tech) (BPAGALAM), Disability Services & Independent Living Support (BPAGACAG), Family & Parenting Support Services (BPAGAEAC)

Keywords

• Family support services
• Trisomy 13 support
• Trisomy 18 support
• Bereavement support
• Genetic condition charity

Headquarters

HQ city

Glasgow

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, Infrastructure, Others

Revenue model

1. Donations and Fundraising: SOFT UK relies on community fundraising, individual donations, and campaign-based fundraising to support operations. The charity runs seasonal campaigns like Summer of Support and Trisomy Awareness Month fundraising efforts.
2. JustGiving Platform: Online donations and fundraising through JustGiving platform. Supporters can make one-off donations or set up recurring fundraising pages for events.
3. Event-based Fundraising: Family fundraising activities including marathons, step challenges, craft fairs, and community events organized by supporters.

Go-to-market motion2 records

Distribution channels6 records

Marketing channels9 records

Core offering

SOFT UK is a UK-registered charity that provides free emotional, informational, and community support to families affected by Trisomy 13 (Patau's Syndrome) and Trisomy 18 (Edwards' Syndrome). Its core offerings include a confidential helpline, closed Facebook peer support groups, Zoom support calls, in-person Family Days, family story podcasts, educational resources, healthcare professional training webinars, and remembrance services such as the Wall of Stars.

Product overview

SOFT UK is a UK-based charitable organization (not a technology company) that provides support, information, and community services to families affected by Trisomy 13 (Patau syndrome) and Trisomy 18 (Edwards syndrome). The organization operates a comprehensive support ecosystem comprising a confidential helpline, closed Facebook support groups, in-person Family Days, Zoom support calls, family story podcasts, educational resources, healthcare professional training webinars, and remembrance services. The core offering is emotional and practical support for families throughout their journey, from prenatal diagnosis through bereavement support.

Differentiator

Problem solved

Functional benefit

Products and services

• SOFT UK Support Line A confidential helpline (0300 102 7638) providing emotional support for anyone whose pregnancy or child is affected by Edwards' syndrome (Trisomy 18) or Patau's syndrome (Trisomy 13).
• Family Days In-person gatherings bringing together families affected by Trisomy 13 and 18 for connection, support, shared experiences, and community building, held across England, Scotland, Wales, and Northern Ireland.
• Support Groups (Facebook) Closed Facebook groups providing peer support including 'Your Trisomy 13/18 Journey', 'Living With Trisomy 13/18', 'Support For Families Ending a Pregnancy', 'Grandparents', 'Bereaved Parents Support Group', 'Support For Dads', and regional groups for Northern Ireland, Wales, and Scotland.
• Family Stories and Podcasts Published family stories and podcast episodes sharing lived experiences of families affected by Trisomy 13 and 18, distributed via website and Spotify.
• Resources and Publications Educational materials, guides, and information resources for families and healthcare professionals about Trisomy conditions.
• Healthcare Professional Training/Webinars Educational webinars and training sessions for healthcare professionals on supporting families affected by Trisomy, including collaboration with NHS, Making Families Count, HCRG Care Group, and BMUS.
• Remembrance Services Wall of Stars and monthly remembrance video for remembering children who have passed, plus annual awards (e.g., Outstanding Clinical Care Award 2026) recognising healthcare professionals.
• Family Link List Volunteer network connecting families who want to offer informal peer support to other families based on similar experiences.
• Zoom Support Calls Regular group video calls on Zoom for families at different stages including expectant families, families living with Trisomy, and bereaved families.
• Trisomy Awareness Campaigns Annual Trisomy Awareness Month activities in March including fundraising, community engagement, and educational outreach, reaching 222,396 people in March 2026.

Quantifiable outcome

• Reached 931,103 people through website and social media in first half of 2026
• +1 more outcomes

Named customers5 records

Segments2 records

Ideal customer profiles2 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Integration6 records

Partnerships

Seven partnerships are on record, tiered core and minor.

• HCRG Care GroupcoreStrategic or Co-development Partner · 8 May 2026SOFT UK collaborated with HCRG Care Group to deliver a session titled 'Hearing the Parent's Voice: Supporting Families After a Life-Limiting Diagnosis.' Shaun Dowdall and Sonia Sankoli represented SOFT UK, sharing the charity's work supporting families affected by Trisomy 13, 18, and related conditions.
• Making Families CountcoreStrategic or Co-development Partner · 18 April 2024First-time collaboration between Making Families Count and SOFT UK for a webinar on caring for children with complex needs. The webinar featured families and healthcare professionals from the SOFT UK community sharing lived experiences and suggestions for supporting families.
• NHScoreStrategic or Co-development PartnerCollaboration with NHS to create a video supporting expectant parents facing a diagnosis of Edwards' syndrome. The project began due to identified lack of information available to expectant parents and aimed to provide human insight into pregnancy affected by Trisomy 18.
• Southern Illinois University Carbondale - TRIS ProjectminorStrategic or Co-development PartnerDr Deborah Bruns, Principal Investigator of the Tracking Rare Incidence Syndromes (TRIS) project, served as guest speaker at SOFT UK Family Day. The TRIS project is a global initiative bringing together families, researchers, and professionals to better understand rare genetic conditions including Trisomy 13 and 18.
• JustGivingcoreChannel Partner/ Reseller/ DistributorJustGiving platform used for online donations and fundraising. SOFT UK receives contributions through this third-party fundraising platform which handles payment processing.
• Helen & Douglas House Children's HospiceminorStrategic or Co-development PartnerKate ran the London Marathon in 2024 in support of both Helen & Douglas House children's hospice and SOFT UK. Helen & Douglas House lent SOFT UK one of their marathon places.
• THHN Memory MakersminorStrategic or Co-development PartnerCharity that helped Autumn's family organize a family holiday to Paignton, supporting families with complex needs.

Scale indicators5 records

Recent moves6 records

Expansion highlights5 records

Emerging players

• Child Bereavement UK: UK charity supporting bereaved children and families including bereavement after life-limiting prenatal diagnoses; comparable professional training and family-support services for an overlapping bereaved-parent population.
• Bliss (for babies born premature or sick): UK charity supporting families of premature and sick babies, many with overlapping neonatal journeys including Trisomy diagnoses; similar helpline + community model with adjacent beneficiary overlap.

Broad incumbents

• Contact (For Families with Disabled Children): UK charity supporting families with disabled children including those with rare genetic conditions; shares helpline, peer networks, and information resource model with SOFT UK.
• Down's Syndrome Association: Larger UK charity supporting families affected by Trisomy 21; comparable operating model (helpline, regional groups, professional info, family events) but a much larger and more mature organization.
• Genetic Alliance UK: UK umbrella body representing rare-disease patient groups, including Trisomy 13/18 communities; comparable advocacy and information role but operating one level above individual charities.
• SOFT (Support Organization for Trisomy 13, 18 and Related Disorders, US): The original US-based parent organization founded in 1979 for the same Trisomy 13 and 18 populations; directly comparable mission and service mix, and historically the namesake of SOFT UK.

Direct peers

• Antenatal Results and Choices (ARC): UK charity providing information and support to families around antenatal screening and diagnosis decisions, including Trisomy 13/18; serves an overlapping prenatal-diagnosis audience with peer support and professional training.
• Sands (Stillbirth and Neonatal Death Charity): UK charity supporting bereaved parents through pregnancy loss and neonatal death, including Trisomy-related losses; directly comparable bereavement support, peer networks, and healthcare-professional education model.
• Together for Short Lives: UK charity for children with life-limiting conditions and their families; addresses similar life-limiting diagnoses (including Trisomy 13/18) with family support, professional resources, and advocacy.
• Unique (Rare Chromosome & Gene Disorders Support): UK charity supporting families affected by rare chromosome disorders including Trisomy 13/18; overlapping beneficiary base, peer-support helpline, and information resources make this a close functional peer.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat4 records

Key risks5 records

Key highlights7 records

Customer concentration

• Facebookfacebook.com/SOFTUKFamilies
• LinkedInlinkedin.com/company/soft-uk

Compliance2 records

Revenue estimate

Valuation estimate

Number of profiles

Profiles3 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 SOFT UK