Fowler’s Syndrome Community Conference

We are hosting the largest gathering of the Fowler’s Syndrome community ever held,  and you’re invited. For the first time ever individuals with Fowler's syndrome, their friends, family and allies will come together for the first dedicated, community-led event bringing lived experience and clinical expertise into the same room.

The afternoon will feature five expert-led panels on:

• FND and Fowler’s Syndrome
• Pain
• Pregnancy
• UTIs
• Sacral Neuromodulation (SNS)

Every session begins with lived experience from Fowler’s Foxes, followed by discussion and audience Q&A.

There will also be time for networking, light refreshments, and a chance to have your portrait taken by our event photographer.

Join us for an afternoon of inspiring talks, shared stories, and pioneering discussions that will change the landscape for our community.

Why it matters

FSUK research (link) shows the urgency of this work:

• 76% have been told their condition is “in their heads”
• Only 30% have ever been offered mental health support
• Diagnosis takes an average of 3.8 years
• 85% say the condition has a severe or devastating impact
• 91% experience bladder pain, urethral pain, and chronic UTIs

This event is a historic moment for the community,  a chance to be seen, heard, and connected.

Who Can Attend

Everyone is welcome, including:

Fowler’s Foxes, friends/family, carers, clinicians, allied health professionals, charity partners, people with unexplained urinary retention or undiagnosed bladder issues, and anyone interested in learning more.

Bursary & Pay-It-Forward Tickets

We offer bursary places for those who need financial support.

A Pay It Forward ticket (£10 above Standard) helps another Fox attend.

To apply for a bursary code, email ZGFuaSB8IGZvd2xlcnNzeW5kcm9tZSAhIGNvICEgdWs=.

Book Your Place

Tickets are limited, and urine for something special at this event.

Secure your place now and join us for a landmark moment in Fowler’s Syndrome history.

This is more than a conference – it’s a chance to connect, be heard and drive real change for the Fowler’s community.

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