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INFACT Parent & Carer Meet-Ups UK | Support for Families Affected by FVSD & FACS

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 pleased to welcome Eva from the Fetal Exposure to Medicines Service Clinic, giving parents a valuable opportunity to learn more about the service and ask questions directly.

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.

Click on the venues below to book your tickets

  • Exeter (date to be confirmed)

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.

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INFACT Launching Community Meet-Ups Across the UK to Support Families Affected by Sodium Valproate

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.

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Significant Update: Government Commits to Valproate Compensation Scheme

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.

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 This Christmas, Skip the Cards – Give Hope Instead 

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. 

💛✨

👉  Donate here: https://infactuk.com/donate/ INFACT

Thank you for believing in what we do, every gift, no matter the size, makes a difference. 

💛

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Why France Has Compensation and Why The UK Doesn’t (YET!)

A Clear Explanation for Families

We know how painful and unfair it feels to watch families in France receive compensation for the harm caused by Valproate (Epilim), while families here in the UK continue to be denied justice. The difference isn’t the harm, because the harm is the same devastating harm in both countries and around the world.

The difference lies in the legal systems and political decisions made in each nation.

1️⃣ Key Legal Differences: Funding & Responsibility

🇫🇷 France

What happened:

Families successfully brought a class action against Sanofi (the manufacturer) and the French medicines regulator(ANSM).

Outcome:

The courts found both Sanofi and the State responsible for failing to warn women.

As a result, in 2017 the French Parliament created a National No-Fault Compensation Fund (ONIAM).

🇬🇧United Kingdom

What happened:

Legal Aid for the UK class action (known as the FAC Litigation) was withdrawn in 2012, shutting down the only legal route that could have forced Sanofi to compensate families.

Outcome:

Without Legal Aid, families were left with no viable way to pursue litigation against the manufacturer. Bottom line:

France won its case in court.

The UK case was stopped, not because of weak evidence, but because Legal Aid was pulled.

2️⃣ The UK’s Only Remaining Route, Parliament:

Because the legal case against Sanofi was shut down, the only path left is to hold the UK Government to account for its failures.

This is known as the Parliamentary Route, the strategy INFACT is currently pursuing, on firm legal advice.

Why Litigation Is No Longer Possible in the UK?

To avoid confusion:

No new legal action can be taken against Sanofi in the UK.

Even families who were not part of the original litigation cannot start a new claim because:

The UK spent £3.2 million in public funds preparing the class action

When Legal Aid was withdrawn, the case collapsed.

Financially, it is impossible to privately fund a lawsuit of this size.

Legally, the precedent and procedural history block future claims.

Why was Legal Aid really withdrawn?

The Legal Services Commission withdrew Legal Aid from the case as it was deemed by them that the case was not sufficiently likely to succeed in court against the manufacturer, Sanofi. The decision to withdraw legal aid was appealed by the claimants, but the appeal was rejected by an independent panel of lawyers.

Documents uncovered later by INFACT indicate that the evidence gathered would likely have shown:

Sanofi warned the UK Government about serious risks, even though Sanofi failed to issue stronger public warnings in the 1980s.

The Government then chose deliberately not to warn women, despite knowing the risks.

This dual responsibility, manufacturer and State, may have been politically explosive, and withdrawing public funding halted the case before those findings could reach court. This is why the Parliamentary Route is now the only viable pathway to compensation.

Moral vs Legal Responsibility:

It’s important for families to understand a key distinction: Morally, Sanofi is responsible.

It is their medicine, and they failed for decades to provide adequate, timely, and prominent warnings about the risks to unborn babies. Families across the UK, France, and globally were harmed because the manufacturer did not act with the urgency or transparency that was needed.

Legally, however, responsibility in the UK sits with the MHRA and the wider Establishment.

The British regulatory system, the MHRA, Government departments, advisory committees, and health authorities, were the ones who chose what information was shared with women. They received warnings, yet suppressed them.

Because of this, the legal system views the failure as one of State regulation, not manufacturer liability.

This is why the UK cannot pursue Sanofi through the courts, and why the Government must now provide redress.

INFACT’s Breakthrough at the National Archives:

Our investigation at the National Archives was the turning point.

We discovered documents proving that,

as early as 1973, the UK’s Committee on Safety of Medicines knew Valproate carried a high risk of birth defects.

The Government made a deliberate decision to caution doctors but not women taking the medicine.

This evidence which we directly presented to Jeremy Hunt in person when he was Health Minister contributed to the creation of the Independent Medicines and Medical Devices Safety (IMMDS) Review.

3️⃣A Fight Against the Establishment:

Our campaign sits alongside some of the UK’s hardest-fought justice movements:

The Post Office scandal

Hillsborough

Contaminated Blood

WASPI

These campaigns all share something in common:

They challenge deep systemic failings within the State itself.

This work is slow, exhausting, and often met with resistance, but it can be won through persistence, unity, and truth.

4️⃣Our Blueprint for Success:

The Cumberlege Review (2020)

The Independent Medicines and Medical Devices Safety Review (IMMDS), chaired by Baroness Julia Cumberlege, found that thousands of families harmed by Valproate experienced avoidable harm caused by systemic failures.

Key outcomes:

Confirmed decades of failure by regulators, the NHS, and Government.

Highlighted that women were repeatedly dismissed, ignored, or misinformed.

Recommended the creation of an independent Redress Agency and a Government-funded compensation scheme.

The Government offered a “fulsome apology” but rejected the recommendation to introduce compensation.

What Happened Next: INFACT at the Health Select Committee (December 13th, 2022)

Following the Government’s refusal to implement the Cumberlege Review’s recommendation for a compensation agency, INFACT were called to give evidence at the Health and Social Care Select Committee.

On 13th December 2022, we presented the full scale of the Valproate scandal, exposing the decades of Government failures, regulatory neglect, and the human cost carried by families.

Our evidence, delivered directly to MPs, made it impossible for the failings to be ignored any longer. This moment was critical. It was our testimony that pushed the Government to acknowledge the unresolved injustice and ultimately led to the commissioning of the next major report: The Hughes Review.

The Hughes Report (2024) commissioned in the wake of INFACT’s Select Committee evidence, was tasked specifically with examining compensation options for families harmed by Valproate.

Key outcomes:

Recognises the lifelong, devastating harm endured by affected families.

Affirms the urgent need for a Government compensation scheme.

Proposes a realistic, two-stage redress model that could be implemented without delay.

Why Your Voice Matters

In France, families won justice through the courts.

In the UK, our route to justice is through Parliament, and that means your voice is essential.

Every message you send, every story you share, every email to your MP builds the pressure that forces Westminster to act. MP support is absolutely critical. Without MPs raising this in Parliament, the Government can continue to delay, minimise, or ignore the issue.

We need families to keep writing to MPs, meeting with them, sharing your experiences, and asking them to stand with the campaign. The more MPs who speak up, the harder it becomes for the Government to deny the urgent need for compensation and care.

Your voice drives awareness.

Your MPs carry that voice into the heart of Westminster.

Together, we create the pressure needed for change

The Parliamentary Route remains the only legally viable path to justice, with a united community and committed MPs behind us, we will get there.

With the Cumberlege Review and the Hughes Report behind us, along with support from MPs and Peers and the continued support from The Sunday Times and media outlets the evidence is now overwhelming. The Government can no longer deny what happened, or delay addressing it.

Emma Murphy/Janet Williams MBE