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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

Lisbon Half Marathon 2026

11/10/2026

With spectacular sea views, join 7,500 runners to take in the sights of the city

Oxford Half Marathon

11/10/2026

This awesome course is fast and flat, it proudly guides runners through the pristine and winding streets of Oxford in all its historic delight.

Plymouth October Support Group Meeting

13/10/2026

Join us for our support group meeting in Plymouth.

Lived Experience Committee panel on managing symptoms of pituitary conditions

13/10/2026

Join us for the chance to hear from three of our lived experience committee members

Salisbury October 2026 Support Group Meeting

17/10/2026

A friendly support group in the Salisbury area.

Amsterdam Half Marathon

18/10/2026

The Amsterdam half marathon is a perfect destination marathon for charity runners looking for a challenge in a city vibrant with culture. 

More events

News and updates

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Research opportunity: Research study on hypogonadism and testosterone gel

7th October 2026

Spit, not blood: What saliva can tell us about cortisol

30th September 2026

The Leeds and West Yorkshire support group is launching!

29th 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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