AcroTales
AcroTales is a series of interviews with people living with Acromegaly - a rare condition caused by a benign tumour growth in the pituitary gland.If often takes 6-10 years for Acromegaly to be diagnosed and patients usually have a complicated journey to diagnosis. Acromegaly causes an excessive release of growth hormones which results in enlarged facial features, growth of hands and feet, changes in jaw and bone structures, loss of libido, visual problems and more. In each AcroTale, patient and advocate Dan Jeffries talks to acromegalics from around the world, discussing diagnosis, treatment and the effects on social and personal life.
AcroTales
AcroTales Special: Acromegaly UK Patient Engagement Day 2025
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Dan Jeffries
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Season 1
In September 2025, around 30 UK patients (and their families) met in London for a UK Patient Engagement Day.
I set up the first UK Acromegaly Meetup in 2017 and we did them again in 2018 and 2019. Then COVID hit and we hadn't done one since.
Thanks to The Pituitary Foundation and Camurus, we had the resources and support to develop a patient engagment day. And what a day it was. As always, the focus is on those living with acromegaly to have a chance to meet each other, share experiences and learn. We had medical specialists too, who offered great insight into current developments in diagnosis.
During the day I grabbed my microphone and grabbed (not literally) a few attendees for their stories and their thoughts on the day.