About SOFT UK
The UK’s leading charity for Trisomy 13 and 18
SOFT UK is the leading charity in the United Kingdom dedicated to supporting families affected by Trisomy 13 (Patau’s Syndrome) and Trisomy 18 (Edwards’ Syndrome).
For more than three decades, we have been a trusted source of information, support, and connection for families and professionals alike. From diagnosis and pregnancy through to infancy, childhood, and beyond — we are here to help families navigate their journey with compassion and understanding.
Our work extends beyond family support. We collaborate with the NHS, universities, researchers, and professional bodies to improve awareness, care pathways, and long-term outcomes for families.
Through our network, resources, and lived experience, SOFT UK stands as the authoritative voice on Trisomy 13 and 18 — leading change, fostering understanding, and ensuring that no family faces their journey alone.
Supporting Families
You are not alone — we’re here for every step of your journey
Receiving a diagnosis of Trisomy 13 or Trisomy 18 can feel overwhelming. But at SOFT UK, you are never alone.
We provide trusted, compassionate support for families at every stage — from diagnosis and pregnancy to life with your child, and through bereavement and remembrance.
We offer:
• Personalised support from our dedicated team and volunteers.
• Welcome packs and trusted information about Trisomy 13 and 18.
• Peer connections with other families who truly understand.
• Community events, remembrance opportunities, and ongoing support for every stage of your journey.
For over 30 years, families have turned to SOFT UK for reassurance, understanding, and hope. Whatever your story, we are here to walk beside you.
Supporting Professionals
Partnering with healthcare teams, researchers, and educators
At SOFT UK, we work closely with healthcare professionals, researchers, and policy-makers to improve understanding and care for families affected by Trisomy 13 and Trisomy 18.
We provide:
• Accurate, balanced information to share with families following a diagnosis.
• Insights from lived experience, helping shape compassionate, family-centred care.
• Collaboration opportunities for research, training, and awareness initiatives.
• Trusted support services that professionals can confidently signpost families to.
Our ongoing collaboration with the NHS and professional organisations ensures that SOFT UK remains a key partner in the development of evidence-based and empathetic care.
Together, we are improving how Trisomy 13 and 18 are understood and supported across the UK.
History of SOFT UK
From a small group of parents to a national charity leading change
SOFT UK was founded in 1990 by a two mums, Christine Rose and Jenny Robbins who shared the unique experience of raising, loving, and remembering children diagnosed with Trisomy 13 (Patau’s Syndrome) and Trisomy 18 (Edwards’ Syndrome). At a time when little information or support was available, these families came together to create a safe space for understanding, compassion, and shared experience.
From those early meetings and handwritten newsletters, SOFT UK has grown into a national charity and recognised authority on Trisomy 13 and 18. Our roots in lived experience continue to guide everything we do — ensuring that families remain at the heart of our mission.
Over the years, we have:
· Built a nationwide network of volunteers, peer supporters, and family contacts.
· Developed information and welcome resources that are now shared widely by NHS trusts, genetic counsellors, and health professionals.
· Partnered with researchers and professional organisations to help shape understanding, improve care pathways, and advocate for compassionate, evidence-based communication.
· Hosted family and remembrance events that bring together parents, siblings, and professionals to share, learn, and remember.
Today, SOFT UK continues to be the leading voice for Trisomy 13 and 18 in the United Kingdom — combining the compassion of a family-founded charity with the credibility of a trusted partner to the NHS and medical community.
Every milestone we reach is built on the love, courage, and commitment of the families who began our story — and those who continue to shape it today.
We seek to offer support and information at all stages of a family’s experience of Trisomy:
Through prenatal diagnosis and making decisions that are right for them
During pregnancy
Caring for an affected child
Ending a pregnancy
Bereavement and loss
When considering future pregnancies.
Organisations we work with
NHS England
SOFT UK collaborated with the NHS to create a video to support expectant parents facing a diagnosis of Edwards' syndrome. The project was initiated to provide a more human insight into a pregnancy affected by Trisomy 18, as there was a lack of information available to expectant parents. The video features different families sharing their journeys and experiences, with the aim of providing support and comfort to those going through similar situations. The result is a powerful video, which SOFT UK helped to develop, working closely with the team at Public Health England.
The Trisomy 18 video can be found here.
Chloe and Penelope’s video can be found here.
TFMR Support Organistation
SOFT UK is part of the network of TFMR specific organisations, charities and support spaces that are safe for the TFMR community. We stand with TFMR families to show our love and support.
Help is available via our support team by calling 0300 102 7638 Monday to Friday or emailing support@soft.org.uk.
We also support TFMR Awareness Day annually on 4 May and you can follow @tfmrawarenessday for more information and updates. Look out for the podcasts we have recorded on the subject on our podcast.
Same But Different
In collaboration with Same But Different, we helped created 'You're not Alone', a short film that provides insight into the experiences of families affected by trisomy 13/18. The film captures conversations with families and features stunning photography by Ceridwen Hughes. We hope that this film will provide support and comfort to those who may feel isolated or overwhelmed following a trisomy 13/18 diagnosis.
To find out more and watch the film here: https://www.samebutdifferentcic.org.uk/yourenotalone
The Student Voice Prize
SOFT UK is proud to once again participate in the annual Student Voice Prize project, an international essay competition that aims to raise awareness of rare diseases within the medical field, particularly among medical students, nurses, and scientists who may not have encountered rare diseases during their training. Hosted by Beacon and Medics4RareDiseases, the competition provides an opportunity for the winner's essay to be published in The Orphanet Journal of Rare Diseases, enabling them to share their knowledge and expertise with a global audience. We have been involved in this initiative for the past two years and are honored to support this essential project in promoting greater understanding of rare diseases among young qualifying medical professionals.
Our Sam
Our Sam is an organization that is committed to raising awareness, improving support, and providing access to resources for anyone affected by baby loss due to stillbirth, miscarriage, termination for medical reasons, or neonatal death. We are honored to have worked with Our Sam to provide support and raise awareness of trisomy 13 and 18 in a series of podcast that they recorded. These can be heard by clicking on the below links:
https://oursam.org.uk/soft-uk-supporting-families-with-trisomies-13-and-18/
https://oursam.org.uk/serena-pascall-and-jamjam-experience-with-trisomy-13/
https://oursam.org.uk/trisomy-through-the-eyes-of-a-neonatal-consultant/
https://oursam.org.uk/edwards-syndrome-trisomy-18-pataus-syndrome-13/
To find our more about Our Sam, visit: https://oursam.org.uk/
PELiCaN Paediatric End of Life Care Network
The Paediatric End of Life Care Network was established in April 2019 with the aim of supporting delivery and improving access to high quality, patient and family centred, end of life care for children and young people; regardless of age, ethnicity or geographical location.
We have collaborated with them to provide training to midwives and other healthcare professionals in Scotland. This presentation aimed to educate medical professionals on the impact of delivering unexpected news.
Verity’s Village
A US based non profit, that provides support for families who receive a life-limiting diagnosis for their babies.
We are honored to have collaborated with Verity's Village on two impactful podcasts, delving into important topics and sharing valuable insights. Together, we aim to create a network of compassion and understanding.
Discover more about Verity's Village and their helpful resources for parents by visiting their website: 👉 https://veritysvillage.com/resources/
The E.WE Foundation
A remarkable healthcare advocacy organization for families with rare diseases. Together, we strive to make a positive impact in the lives of those facing rare diseases. We have had the privilege of collaborating with them on a thought-provoking podcast episode about their son Elijah, with trisomy 18 and we were featured on their Mother's Day edition of the 'Being Rare' podcast. To learn more about The E.WE Foundation and their invaluable work, visit their website: 👉 https://theewefoundation.org/.
ARC (Antenatal Results and Choices)
The only national charity dedicated to supporting parents and healthcare professionals throughout the process of antenatal screening and its consequences. ARC offers invaluable guidance, information, and compassionate support to families navigating this crucial stage of pregnancy.
For a comprehensive understanding of the tests available during pregnancy, visit https://www.arc-uk.org/tests-explained/. There, you will find a helpful breakdown of the various tests offered, empowering you to make informed decisions and ensure the best possible care for you and your baby.
SANDS
As a well-established and widely respected organization, SANDS is dedicated to supporting anyone affected by the devastating loss of a baby. They work in close partnership with health professionals to ensure that bereaved parents and families receive the utmost care and support during such challenging times.
To explore the various ways in which SANDS can offer support, visit their website at: 👉 https://www.sands.org.uk/support-you/how-we-offer-support.
Together for Short Lives
An organization dedicated to supporting professionals who care for seriously ill children, young people, and their families. Their unwavering commitment extends to all the professionals involved in the care of babies, children, and young individuals with life-limiting conditions.
They offer a wide range of resources and tools to support your vital work with children and families, ensuring that you have the necessary support to provide the best possible care. To discover more visit https://www.togetherforshortlives.org.uk/get-support/.
Genetic Alliance
They work to ensure the needs and preferences of individuals affected by genetic, rare, and undiagnosed conditions are met. They work alongside organizations and individuals, to advocate for comprehensive support and understanding.
Discover valuable information about genetics, inheritance, research, genetic testing, services in the UK, reproductive techniques, and living with a genetic condition at: 👉 https://geneticalliance.org.uk/information/living-with-a-genetic-condition/. This resource provides a wealth of knowledge to empower individuals and families on their unique journeys.
Medics for Rare Diseases
An organization dedicated to driving an attitude change towards rare diseases among healthcare professionals, benefiting individuals with rare conditions and their medical caregivers.
In our recorded podcast titled 'Embracing uncertainty when expecting a baby with a genetic condition,' we delve into important discussions with them. Listen to the podcast here: https://www.m4rd.org/podcast/.
