• Thank you to everyone who has shared their story with us.  We know from experience that newly diagnosed patients find it very helpful to see how others were diagnosed and treated, as well as how they are living with their disease years later.  If you want to share your story too, please scroll down and download a template (if required) and send your story to Jo Grey.

  • Joanne - Sporadic Phaeochromocytoma

  • Carol - Sporadic Phaeochromocytoma

  • Natalie - Sporadic Phaeochromocytoma

  • Emma - Metastatic Phaeochromocytoma

  • Dorne - Hereditary PPGL Syndrome (SDHC)

  • Jo - Hereditary Phaeochromocytoma (MEN2A)

  • More Coming Soon!

Patient Experience Videos

  • Diagnosis of PPGL Syndrome Tumours

  • Treatment for PPGL Syndrome Tumours

  • Thinking of the Future

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