• The following organisations may be of use to people with phaeochromocytoma and paraganglioma tumours and syndromes:

    • AMEND (Association for Multiple Endocrine Neoplasia Disorders) – Phaeo Para Support UK is a part of and is managed by AMEND.¬† Additional resources with regard to emotional wellbeing¬† and genetics may be found here, as well as details on how to fundraise for PPSUK.
    • Neuroendocrine Cancer UK – support and education for patients and families affected by sporadic neuroendocrine tumours.
    • GIST Cancer UK – support and education for people with gastrointestinal stromal tumours
    • Paediatric and Adult Wild-Type GIST – website developed by clinicians regarding gastrointestinal stromal tumours for patients based at Addenbrooke’s Hospital in Cambridge
    • Kidney Cancer UK – support and information for patients with kidney cancer (Renal Cell Carcinoma)
    • Pheo Para Alliance– American group of patients and clinicians
    • NVPG Ned – patient group in The Netherlands
    • Human Fertilisation & Embryology Authority (HFEA) – information on UK regulations for use of Pre-implatation Genetic Diagnosis (PGD) in SDHB

     

    *Please note that neither AMEND nor Phaeo Para Support UK can be held responsible for information held on the above websites.