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.