We are pleased to share this new Fetal Valproate Spectrum Disorder (FVSD) Booklet, developed and coordinated by the specialist teams in Manchester and Newcastle as part of the Fetal Exposure to Medicines Service (FEMS), alongside the invaluable involvement of parents and families affected by FVSD.
This informative and compassionate guide has been created to help families, carers, professionals, schools, and workplaces better understand the wide range of physical, sensory, cognitive, social, and emotional impacts associated with FVSD. The booklet also includes practical advice, support strategies, and information about accessing further help and services. We welcome this important step forward in improving awareness, understanding, and support for those living with FVSD. The booklet is now available for parents and families, healthcare professionals to download free of charge.
At INFACT, we are committed to ensuring that families affected by Fetal Valproate Spectrum Disorder (FVSD) and Fetal Anti-Convulsant Syndrome (FACS) feel supported, connected, and heard.
As part of this work, we are now hosting a series of INFACT parent and carer meet-ups across the UK, providing a safe and welcoming space for families impacted by anti-seizure medications in pregnancy, including Sodium Valproate.
💛 A Supportive Space for Families
Our meet-ups are designed to be informal, relaxed, and inclusive, offering families the opportunity to:
Meet other parents and carers affected by FVSD and FACS
Share lived experiences in a safe and understanding environment
Access information and discuss services and support
Reduce isolation by connecting with others on a similar journey
Express their story, or simply listen
There is no pressure to speak or share. You are welcome to attend in a way that feels comfortable for you.
💛 Children and adults with FVSD are welcome to attend, creating an important opportunity for peer connection as well as family support.
🌟 Manchester Meet-Up – A Strong Start
We are proud to share that our first INFACT parent meet-up in Manchester was a great success.
Families travelled from across the UK to attend, highlighting the clear need for safe, supportive spaces where people can connect and feel understood.
We were also honoured to be joined by Deputy Mayor of Manchester Kate Green, a former MP and long-standing supporter of the campaign. It was wonderful to reconnect and continue these important conversations.
Feedback from families has been overwhelmingly positive and is already helping us to shape and improve future events.
“Going to the first Manchester INFACT meet up was really lovely. I attended with my husband Matt and our son Tyler, and it was so nice to finally meet other families affected by Sodium Valproate who genuinely understand what life is like.
As parents, it can feel quite isolating at times, so being able to sit and talk with people who just ‘get it’ was really comforting. Tyler met fellow affected young adults, and it meant a lot seeing him around others with similar experiences and additional needs.
The whole day felt really relaxed and supportive, and we came away feeling less alone. We’re really grateful to INFACT for organising something like this and bringing families together ” Jade
📍 Upcoming INFACT Meet-Ups Across the UK
Following the success of Manchester, we are continuing our national programme:
🎟️ Book Your Free Place
All INFACT parent meet-ups are free to attend, but we kindly ask that you register via Eventbrite to help us manage numbers and ensure a safe, comfortable environment.
Each event is designed to provide a local, accessible support opportunity for families affected by FVSD, FACS, and other anti-seizure medications in pregnancy.
All venues will be:
Publicly accessible
Located close to major transport links, including train stations
Final venue details will be confirmed closer to each event.
🤍 Supporting Families Across the UK
INFACT is a parent-led UK charity supporting families affected by anti-convulsant exposure in pregnancy. Through campaigning, awareness, and direct family support, we are working to ensure that no family feels alone.
These meet-ups are just one part of our ongoing commitment to:
Improve awareness of FVSD and FACS
Support families navigating diagnosis and daily life
Create meaningful connections within the community
💛 You are not alone in this journey
❓ What are INFACT parent meet-ups?
INFACT parent meet-ups are informal, supportive gatherings for families affected by Fetal Valproate Spectrum Disorder (FVSD), Fetal Anti-Convulsant Syndrome (FACS), and other anti-seizure medications in pregnancy. They provide a safe space to connect, share experiences, and access support.
❓ Who can attend the INFACT meet-ups?
Our meet-ups are open to parents, carers, and families. Children and adults with FVSD are also very welcome to attend, giving them the opportunity to connect with others their age.
❓ Do I have to speak or share my story?
No. There is absolutely no pressure to speak. You are welcome to attend, listen, and take part in a way that feels comfortable for you.
❓ Are the INFACT meet-ups free?
Yes, all INFACT meet-ups are completely free to attend. However, we do ask that you register in advance via Eventbrite.
❓ How do I book a place?
All places must be booked via Eventbrite. This helps us manage numbers and ensure a safe and comfortable environment for everyone attending.
❓ Where are the meet-ups held?
We host meet-ups across the UK, including London, Birmingham, Newcastle, and Exeter. All venues are publicly accessible and located close to major transport links such as train stations.
❓ Will I receive support or information at the event?
Yes. The meet-ups are an opportunity to gather information, share experiences, and connect with others. At some events, professionals or guest speakers may also attend to provide additional support and insight.
❓ What is Fetal Valproate Spectrum Disorder (FVSD)?
FVSD is a condition caused by exposure to Sodium Valproate during pregnancy. It can affect physical development, learning, and behaviour, and often requires lifelong support.
INFACT (The Independent Fetal Anti-Convulsant Trust) is pleased to announce that we will soon be launching a series of community meet-ups across the UK for families affected by Sodium Valproate and other anti-epileptic medicines taken during pregnancy.
For many years families from across the UK have contacted INFACT seeking support, information, and guidance following a diagnosis of Fetal Valproate Spectrum Disorder (FVSD) or other Fetal Anti-Convulsant Syndromes (FACS).
While we regularly support families through our online community, email and telephone support, we recognise how important it can be for families to meet in person, share experiences, and connect with others who understand the challenges they face.
These community events will allow us to bring the campaign directly into local communities, giving families the opportunity to meet the INFACT team face to face in a welcoming and supportive environment.
What Families Can Expect
Our community meet-ups will provide an opportunity for families to:
• Receive one-to-one support and guidance from the INFACT team • Access information about Fetal Valproate Spectrum Disorder (FVSD) and Fetal Anti-Convulsant Syndromes (FACS) • Get advice on healthcare, education and benefits support • Hear updates on the national campaign and progress around recognition and redress • Connect with other families who share similar experiences
Living with the impact of these medicines can be incredibly challenging for both children and adults affected, and many families describe feeling isolated or unsure where to turn for trusted information and support.
Our aim is to create safe and supportive spaces where families feel listened to, understood, and connected to a wider community.
Help Us Plan the Locations
We are currently planning around six community meet-ups across the UK.
In order to organise these events and ensure they are held in locations that are accessible to as many families as possible, we would like to hear from those who may be interested in attending.
If you would like to attend a future meet-up, please contact us and let us know your approximate location. This will help us determine the most suitable areas for hosting these events.
Bringing the Community Together
For many years INFACT has worked alongside families, healthcare professionals, policymakers and parliamentarians to raise awareness of the risks associated with Sodium Valproate in pregnancy and to advocate for better recognition and support for those affected.
These community meet-ups represent an important step in strengthening support networks for families and ensuring that lived experience continues to shape the work we do.
Further information about locations and dates will be shared soon.
This week marks an important development for families affected by sodium valproate exposure in pregnancy.
As reported by ITV News Granada, the Health Secretary has publicly committed to introducing a compensation scheme for those harmed by sodium valproate before the next General Election.
For families affected by Fetal Valproate Spectrum Disorder (FVSD), this marks a significant moment and brings cautious hope.
“Given how long families have campaigned for justice, I can well understand why and they are critical, having waited so long and I have got to take that criticism on the chin.
“I am sorry to families that they have waiting so long. I am asking them to bare with me but we will get there.” Wes Streeting – Secretary of State for Health and Social Care
However, it is important to be clear about the timeline. Families have not been waiting two years for justice. It has been eight years since the Cumberlege Review was first commissioned and 6 years since its publication which confirmed that the healthcare system failed to properly warn women of the serious risks associated with sodium valproate in pregnancy. If we look back further to the collapsed Product Liability and Clinical Negligence legal actions, families have in reality been fighting for accountability and redress for well over 3 decades.
This context matters.
Last week’s Westminster Hall Debate led by Sarah Green MP , the response left many families disappointed. There was a sense that urgency was still missing. Against that devastating response, this latest commitment represents a notable shift. It signals recognition that financial redress must now move from discussion to delivery.
At INFACT, we welcome this commitment. We recognise the strength, resilience and persistence of families whose voices have driven this change. Without their determination, we would not be at this point.
We will continue to engage constructively to ensure that:
The compensation scheme is fair and transparent
Payments reflect the lifelong and complex needs of affected individuals
The process is timely and does not place further burden on families
Clear timelines and implementation details are published without delay
Families have carried the emotional, physical and financial impact of this harm for far too long. Many children are now adults living with significant disabilities. Parents are ageing. The need for certainty and practical support is urgent.
This announcement is progress. It must now lead to action.
We remain committed to standing beside and supporting every family until justice is fully achieved.
More and more people are choosing not to send Christmas cards, and instead donate what they would have spent to causes close to their hearts.
This year, if you’re thinking about doing the same, We’d love for you to consider supporting INFACT.
INFACT exists to support families whose lives have been changed forever by exposure to Sodium Valproate and other anti-epileptic drugs during pregnancy. We are the UK’s leading national charity for Fetal Valproate Spectrum Disorder (FVSD) and Fetal Anti-Convulsant Syndrome (FACS) – a lifelong disability that affects thousands of children and their families.
We do this because no family should face this alone – yet with no government and pharmaceutical funding and a non profit organisation, every penny we receive matters.
Your donation helps us to: • Provide free educational resources, practical support, and guidance for parents, carers, and professionals. • Run vital awareness and national campaigns to keep FVSD and FACS on the political agenda. • Lobby government, regulators, and MPs to push for justice, recognition, and better protections for affected families. • Cover essential costs that keep our helpline, website, resources, and community going strong.
If each member and supporter donated just £5, together we could raise a remarkable amount – and make sure our voice stays loud and strong in 2026 and beyond.
This Christmas, let’s turn the love we share into real support and real change for families who need it most.
INFACT 