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Supporting everyone in the pituitary community, every step of the way.

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Tell us about your diagnosis experience

We want to understand better how it feels to be diagnosed with a pituitary condition. Please fill out our survey to share your experience.

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Pituitary Conditions
Symptoms, Diagnosis & Treatment
Living with a Pituitary Condition
Healthcare Professionals
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  • Pituitary Conditions
  • Symptoms, Diagnosis & Treatment
  • Living with a Pituitary Condition
  • Healthcare Professionals

Have you been diagnosed with a pitutiary condition?

We're here to help you understand what this means. Take a look below to find the information you need.

AVP Deficiency (Diabetes Insipidus)
Arginine Vasopressin Deficiency (AVP-D), formerly known as Cranial Diabetes insipidus (DI), is caused by a problem with either the production, or action, of the hormone vasopressin (AVP). If you have DI your kidneys are unable to retain water.
Cushing’s Disease
Cushing's is a condition caused by having too much of a hormone called cortisol in your body. It can be serious if it's not treated. Symptoms usually develop gradually and so the diagnosis may not be clear for some time.
Prolactinoma
A prolactinoma is a prolactin-producing tumour of the pituitary gland. The symptoms produced by a prolactinoma depend on the sex of the patient and the size of the tumour.
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Our Impact

Our vision is that all people with pituitary conditions live well, now and in the future. We work with everyone with a pituitary condition, their support networks and healthcare professionals to raise pituitary awareness and reduce time to diagnosis.

34,900+

support enquiries answered

2100+

members in our network

95%

of attendees rated our events good or excellent

Our Story Become a Member

Stories from our community

Tilly Rose smiling under a tree with pink flowers, with the Rare Disease Day logo at the bottom left of the picture

‘I have become a zebra with too many stripes’ – Tilly Rose’s story for Rare Disease Day 2026

Francesca is in a hospital bed drinking from a cup out of a straw. She has medical tape and packing over her nose.

Francesca’s story: A three-year undiagnosed rollercoaster

Risa’s story: Living life to its fullest with Acromegaly

See more

Join an event

Solent and Isle of Wight September Support Group Meeting

26/09/2026

Join us for an interactive session with a specialist endocrine nurse.

Taunton/Yeovil September Support Group Meeting

29/09/2026

The South West Support Group are meeting in South Petherton, Somerset.

Bristol October Support Group Meeting

03/10/2026

Friendly support group for people affected by pituitary conditions in the Bristol area.

Sleep, circadian rhythms and managing fatigue

06/10/2026

Join us for the chance to hear from Professor David Ray, Professor of Endocrinology at The University of Oxford.

Exeter October Support Group Meeting

07/10/2026

Join us for our support group meeting in Exeter.

Edinburgh Get-Together

10/10/2026

Join us at the Edinburgh Get-Together October 2026, an opportunity to hear from medical experts and meet others affected by pituitary conditions!

More events

News and updates

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Research opportunity: How do you monitor and manage your sodium levels with adult growth hormone deficiency (AGHD)?

22nd September 2026
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Take part in a global acromegaly survey

22nd September 2026
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Symptoms in the Spotlight: Appearance changes and the emotional impact of this

21st September 2026
More news and updates

We're here to support everyone affected by pituitary conditions. Your donation makes this possible.

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