The Pituitary Foundation

Supporting anyone affected by pituitary conditions through helplines, support groups, and events.
Join #TeamPituitary to raise essential funds

[Hani J Marcus @hani_marcus]

We held a Queen Square Pituitary Patient & Research Open Day earlier this month with the @Pituitary_org. Really nice to meet patients and families, and to share how some of the work were are doing now may fit into pituitary surgery in the future, including our AI work the UCL Hawkes Institute and robotics work at Panda Surgical.

Patient blog here: https://t.co/hd4eawdpDN

[The Pituitary Foundation @Pituitary_org]

@Karavitaki_Niki @UoB_MSS @BHPComms We're very pleased to have you join our Board Niki! Thank you for your continued support 🙂

[Hani J Marcus @hani_marcus]

Define the disease. Define the steps of surgery performed. Measure the outcomes that matter. Set research priorities to do better – then repeat.
Over the past few years, with
@PituitarySoc, @Pituitary_org, and other partner organisations, we’ve put this loop in place:
• Disease classification to describe what we treat (https://t.co/iY0ceqmfyq) – led by Giorgio Fiore
• Workflow consensus to define what we do (https://t.co/P7dVZ3dpD4) – led by @dzkhan94
• Core Outcome Set & PROM to measure what matters (https://t.co/CKuZkDt4Id / https://t.co/ud6GHfOpdw) – led by Alexandra Valetopoulou & Elika Karvandi
• Priority Setting Partnership to try and do better (https://t.co/6w4Fb85xEp) – led by @NicolaNewall
Really proud of this body of work, and huge thanks to everyone involved – and to @BrainAppeal for funding.
Full editorial: https://t.co/QhEYIsN1dy

PS. Reposted to include link to the Editorial!

[The Pituitary Foundation @Pituitary_org]

👩‍⚕️ Calling all endocrine healthcare professionals! 👨‍⚕️

Did you know we have a quarterly pituitary updates newsletter?

Subscribe today in time for the next edition 👉️ https://t.co/GVZZY4tNwL

[The Pituitary Foundation @Pituitary_org]

Are you living with prolactinoma?

The PROMISE survey, run by researchers from University Hospital Basel, is exploring patient's experiences of being treated for prolactinoma.

👉️ https://t.co/mr2MXIx4kC

[The Pituitary Foundation @Pituitary_org]

We have lots of Local Support Groups coming up across July and August!

Find out more and sign up for your local group 👉️ https://t.co/CG9gNGMU4r

[The Pituitary Foundation @Pituitary_org]

Welcome to the trustee team Nazifa! We're thrilled to have you join us 🙌

[Pump Court Chambers @PumpCourt]

We are pleased to announce that Nazifa Chowdhury, a barrister in our Civil team, has been appointed a trustee and company secretary of the @Pituitary_org Foundation.

https://t.co/eWuQWz1s4E

[The Pituitary Foundation @Pituitary_org]

Great to see our packs in action! 🙌

If you fancy grabbing one for yourself, you can find them in our shop - https://t.co/QQYXPpXOJp

[Queenie 🧡 @Steph_BBandT]

Got my emergency injection kit via courier from the hospital yesterday and my emergency pack is made up ready to go wherever I do now.

Really pleased with this information pack and printouts/info bundle from @Pituitary_org.

Hopefully I don't have cause to need it again! 🤞🏼

[The Pituitary Foundation @Pituitary_org]

📢 Research opportunity now available 📢

For full details of the study and how to get involved, please see our website 👉️ https://t.co/9dNtqXUDSp

[The Pituitary Foundation @Pituitary_org]

📢 Exciting news!

Join us for an informal and informative day dedicated to those affected by acromegaly.

📆 6th September 2025, 10am - 5pm
📍 Guy's Hospital Tower at Great Maze Pond, London, SE1 9RT
🎟️ Tickets are available through our website 👉️ https://t.co/ciZZ4HPGFU

[The Pituitary Foundation @Pituitary_org]

Join us next week for an educational talk all about pituitary surgery, with Dr Eleni Maratos!

This talk is completely free to attend and will be recorded and made available online, after the event.
⁠
🎫 Register your place now - https://t.co/wZDjhLvHE8

[The Pituitary Foundation @Pituitary_org]

We understand that many of you have been impacted by the recent shortage of desmopressin nasal spray. We want to better understand this impact and are asking for people affected to fill out a short survey

👉️ https://t.co/YHEFCcCYEc

[The Pituitary Foundation @Pituitary_org]

We've collaborated with @AddisonsUK to survey your experiences of receiving prescriptions for vital medications. Please complete this short survey to share your experiences!

👉️ https://t.co/y53Eijamt2

[The Pituitary Foundation @Pituitary_org]

Today is Addison's Disease Day, and the theme for today is 'Know the signs; save a life.'

If you suspect yourself or someone else of having an adrenal crisis, you should call 999 and state that you/they are having an 'adrenal crisis'.

For more information see our website.

[Addison's Disease Self-Help Group (ADSHG) @AddisonsUK]

Thank you to everyone who has signed up for our #AddisonsDiseaseDay Sick Day Rules webinar with @Pituitary_org & @AldonsChua.

🗓️ Wed 28 May | ⏰ 6–7pm | 💻 Free on Zoom

❓ To help manage the popular Q&A session, please submit your questions in advance ⤵️
https://t.co/2JhHxskUoc

[The Pituitary Foundation @Pituitary_org]

🙌 Important announcement! 🙌

Tickets have now been released for our last in-person Get-Together of 2025!

For this event we're coming to Southampton and we would love to see as many of you there as possible.

For full details & tickets - https://t.co/eyecuzkIYu

[The Pituitary Foundation @Pituitary_org]

Don't forget - next week we're holding an online Sick Day Rules Reminder talk, in collaboration with Addison's Disease Day Self Help Group!

There's still time to secure tickets - https://t.co/kd8l7dJmMs
Details:

⏰️ 6pm - 7pm
📅 Wednesday 28th May
💻️ Online via Zoom

[The Pituitary Foundation @Pituitary_org]

Join us for another free online event, this time exploring some of the rarer pituitary conditions!

Dr Anna Crown, Consultant Endocrinologist, will present this talk. There will also be an opportunity for Q&A.
Event details:

Tickets available - https://t.co/XTr76mLVNl

[The Pituitary Foundation @Pituitary_org]

@NS_464 Hi, we understand the worry this issue is causing and we are continuously monitoring the situation. As far as we understand, the issue is due to manufacturing problems. There are alternative forms of desmopressin available so please do discuss this with your endo team/GP

[The Pituitary Foundation @Pituitary_org]

We have received information that current supply issues affecting desmopressin nasal spray will now not be resolved until early September 2025, rather than March 2025, as we previously shared. Read our full update here - https://t.co/dh3kXejxjU