For healthcare professionals

Working with families affected by STXBP1

STXBP1 UK Foundation works alongside clinical teams — not instead of them — to give families consistent, evidence-based information between appointments.

Clinical summaries

Downloadable one-page summaries of STXBP1-related disorder suitable for GPs, school nurses and allied health professionals encountering the condition for the first time.

Natural history data

We help connect clinical teams with published natural history studies and ongoing research consortia to support diagnosis and prognosis conversations.

Family referrals

If you're supporting a newly diagnosed family, we're glad to be a referral point for peer support, benefits guidance and practical resources.

Research collaboration

We support recruitment for ethically approved research and can help put researchers in touch with our patient community.

Downloads

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