• In 2025 Neuroendocrine Cancer UK and AMEND launched the Neuroendocrine Life Alliance, a new collaboration bringing together our organisations to strengthen the voice of the UK neuroendocrine community.  To mark this partnership, we hosted a Patient Summit bringing together patients, families, and experts for a day of information, support, and connection, with sessions covering topics such as genetics, active surveillance, wellbeing, nutrition, and research updates.

    Neuroendocrine Life Alliance Patient Summit
    📅 Saturday 6 June 2026
    📍 Crowne Plaza, Sheffield

     

    PROGRAMME:

    09:30-10:00 Arrival and refreshments

    10:00-10:15  Welcome and plan for the day

    10:15-12:30  Adrenocortical Cancer (ACC) dedicated Q&A session (Cristina Ronchi, Consultant Endocrinologist, University Hospitals Birmingham),

    OR

    10:15-11:00  Choice of 1 of 3 sessions:

    • Newly Diagnosed (with Niki Jervis, Clinical Nurse Specialist, NCUK)
    • Treatments for Advanced Disease (Jon Wadsley, Consultant Oncologist, Sheffield)
    • Medical Management (Cristos Toumpanakis, Consultant Gastroenterologist, London)

     

    11:00-11:45  Choice of 1 of 3 sessions:

    • Genetics and Genetic Testing (Jackie Cook, Consultant in Clinical Genetics, Sheffield)
    • Medical Management (Cristos Toumpanakis, Consultant Gastroenterologist, London)
    • Active Surveillance (Alia Munir, Consultant Endocrinologist, Sheffield)

     

    11:45-12:30  Choice of 1 of 3 sessions:

    • Active Surveillance (Alia Munir, Consultant Endocrinologist, Sheffield)
    • Genetics and Genetic Testing (Jackie Cook, Consultant in Clinical Genetics, Sheffield)
    • Treatments for Advanced Disease (Jon Wadsley, Consultant Oncologist, Sheffield)

     

    12:30-14:00  Lunchbreak and Exhibition Tables (information, merchandise)

     

    14:00-15:30  Hypnotherapy (Maia Sissons, hypnotherapy practitioner)

    OR

    14:00-14:45  Choice of 1 of 2 sessions:

    • Patients supporting themselves (Rareminds Counsellor)
    • Family/Friends supporting patients (Rareminds Counsellor)

     

    14:45-15:30  Supporting children (Rareminds Counsellor)

     

    15:30-16:00  Refreshment break

     

    16:00-17:00  Choice of 1 of 2 sessions:

    • NET/NEC/GenNET Research update (Dr Alia Munir, Consultant Endocrinologist, Sheffield) 
    • Hypnotherapy (Maia Sissons, hypnotherapy practitioner)

     

    17:00  Wrap-up and End

    .

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