Pituitary Ireland

24/08/2026

🩺 Improving Awareness of Rare Diseases

A new review published in the Orphanet Journal of Rare Diseases highlights the importance of improving healthcare professionals’ knowledge and awareness of rare diseases.

The review identifies gaps in education, training and access to specialist resources, which can contribute to delays in recognising and diagnosing rare conditions.

For people living with pituitary conditions, greater awareness among healthcare professionals can help support:

🔹 Earlier recognition and diagnosis
🔹 Better understanding of complex symptoms
🔹 More appropriate referrals to specialist care
🔹 Improved access to information and support
🔹 Better long-term management and care

At Pituitary Ireland, we believe raising awareness of pituitary conditions is essential. Working together with healthcare professionals, specialist services and patient organisations can help ensure that people affected by pituitary conditions receive the understanding and care they deserve.

📖 Read the full review:
https://link.springer.com/article/10.1186/s13023-026-04520-1

Background Rare diseases affect millions globally but remain poorly understood due to low prevalence and fragmented healthcare responses. Patients face long diagnostic delays, known as the “diagnostic odyssey”, due to limited knowledge and awareness among healthcare professionals. This scoping r...

23/08/2026

💜 A supportive community for mums living with pituitary conditions

We’re delighted to spotlight Maternal Pituitary Support and the wonderful online community they have created for women affected by pituitary conditions during pregnancy and after giving birth.

Do you have Sheehan’s Syndrome or Lymphocytic Hypophysitis during pregnancy or postpartum? Are you seeking a diagnosis? Or perhaps you’re a mum living with another pituitary condition?

You don’t have to face it alone. 💜

Their kind and supportive online community connects mums from all around the world, providing a safe space to share experiences, ask questions, find understanding and support one another.

🌍 Free to join

If you or someone you know could benefit from this support, we encourage you to take a look and join the community.

💜 You’re not alone. We’re here for you.

🔗 www.maternalpituitarysupport.org/community

Do you have Sheehan's Syndrome or Lymphocytic Hypophysitis in pregnancy or post-partum? Are you seeking diagnosis? Or are you a mum with a different pituitary condition?

Do you know we have a kind and supportive online community connecting us all over the world?

It's free to join too!

We're here for you x

www.maternalpituitarysupport.org/community

20/08/2026

20/08/2026

💙 Carers’ Perspectives on Sick Day Rules & Pituitary Conditions

Pituitary Ireland is pleased to share this upcoming online event from The Pituitary Foundation (UK), offering an important opportunity to hear directly from carers supporting loved ones living with pituitary conditions.

📅 Tuesday, 1 September 2026
🕕 6:00pm–7:00pm
💻 Online
🎟️ Free to attend – registration required

The session will feature Jack, a partner of someone living with a pituitary condition, and Emily, a mother of someone living with a pituitary condition. They will share their personal experiences of supporting a loved one with Sick Day Rules, including the challenges, responsibilities and practical considerations involved during periods of illness.

The discussion will also highlight the important role carers play in helping to support safety, confidence and wellbeing when someone with a pituitary condition becomes unwell.

💙 Carers play a vital role in supporting people living with pituitary conditions, and their experiences and perspectives matter.

👉 Register for this free online event:
https://www.pituitary.org.uk/event/carers-of-people-with-pituitary-conditions/

While this event is hosted by the Pituitary Foundation UK, the experiences and information shared may be of interest to carers and families supporting people with pituitary conditions in Ireland and beyond.

Join us for a great opportunity to learn more about ways carers support people living with pituitary conditions

19/08/2026

🔬 Research Opportunity: Help us better understand stigma and wellbeing in adults living with chronic illness been conducted by Northumbria University.

Pituitary Ireland is pleased to share this research opportunity for adults living with chronic illness.

The study is exploring stigma and wellbeing among people living with chronic health conditions, helping researchers better understand the experiences, challenges and impact that chronic illness can have on people’s lives.

For people living with rare and complex conditions, including pituitary disorders and other long-term endocrine conditions, research like this is particularly important. Our experiences and perspectives can help inform a better understanding of the wider impact of chronic illness beyond the medical aspects alone.

💙 If you are eligible and feel comfortable participating, we encourage you to consider taking part.

👉 Take part / find out more:
Research Study – Stigma and Well-being in Adults Living with Chronic Illness⁠.

https://nupsych.qualtrics.com/jfe/form/SV_3970jfZvAZNAkXY

By participating in research, patients and patient communities can help ensure that the realities of living with chronic illness are better understood and reflected in future research, healthcare and support services.

Every patient voice matters.

19/08/2026

🚻 Toilet access is a healthcare issue, not a convenience.

For people living with rare diseases like Arginine Vasopressin Deficiency (AVP-D), formerly known as Diabetes Insipidus, having urgent access to a toilet can be a genuine medical necessity.

AVP-D affects the body’s ability to regulate fluid balance and can cause frequent and substantial urination. Being unable to access a toilet when needed can cause distress and anxiety and may increase the risk of dehydration and other health complications. 💧

A No Wait Card / Toilet Access Card provides a simple and discreet way to communicate an urgent medical need — helping protect dignity, safety, independence and inclusion. 💙

🇮🇪 Pituitary Ireland proudly support the No Wait Card Ireland campaign and the call for statutory recognition of a No Wait Card in Ireland.

We also support the Equal Status (Access to Toilet Facilities) Bill 2025 and efforts to improve toilet access for people with medical conditions and disabilities.

This is about more than a card.

It’s about recognising that invisible and rare diseases can create very real and urgent needs.

Everyone deserves:

💙 Dignity
💚 Equality
💙 Access

Together, we can help make Ireland a more accessible and inclusive place for everyone.

Please help us raise awareness and support this important campaign. Share this post and help start the conversation.

No wait card Ireland
Irish Cancer Society
spinalinjuriesireland
crohnscolitisireland

17/08/2026

☀️ AVP deficiency (previously diabetes insipidus)? Take extra steps to stay safe in the heat. see information from the below infographics.

☀️ Adrenal insufficiency? Stick to your Sick Day Rules if you’re unwell, stressed, or injured. Struggling with the heat? Updosing for a few days can help and follow your Sick Day Rules for guidance.

📖 Full guidance from the The Pituitary Foundation (UK), updated June 2026. Written for the UK, check what applies where you live.

Read more ➡️ https://www.pituitary.org.uk/information/heatwave-guidance-for-people-with-pituitary-conditions/

15/08/2026

🌍 We’re delighted to announce that Pituitary Ireland has joined the Share4Rare Community! 💙

As a patient-led nonprofit organisation, we believe in the power of connection, collaboration and the patient voice.

Joining Share4Rare gives us an opportunity to connect with the wider rare disease community, share lived experiences, support patient involvement in research, exchange knowledge and work collaboratively towards better outcomes for people and families living with rare diseases.

We look forward to connecting with the Share4Rare community and bringing the experiences and voices of the pituitary and adrenal community in Ireland to this international platform.

💙 Together, we are stronger.

🌐 www.share4rare.org

EN: 💚 Welcome Pituitary Ireland to the Share4Rare community!

Pituitary Ireland is a nonprofit patient support organisation committed to informing, supporting and improving the lives of individuals and families affected by pituitary gland conditions throughout the Republic of Ireland.

If you would also like your organization to be part of , please fill out the form 👉 https://www.share4rare.org/join_as_patients_organization
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ES: 💚 ¡Bienvenida, Pituitary Ireland, a la comunidad de Share4Rare!

Pituitary Ireland es una asociación de pacientes sin ánimo de lucro comprometida a informar, apoyar y mejorar la vida de las personas y familias afectadas por trastornos de la glándula hipófisis en toda la República de Irlanda.

Si quieres que tu organización también forme parte de , completa el formulario 👉 https://www.share4rare.org/es/join_as_patients_organization

14/08/2026

We’re delighted to share that we’ve updated our information and launched our new website!

At Pituitary Ireland, we’re committed to providing support and information to patients, families, and carers, with accessible, reliable information, support, and community connections for people living with Pituitary gland conditions in the Republic of Ireland.

Visit our new website to explore:

• Support & information services
• Learn about the Pituitary Gland
• access to reputable sources of Pituitary Disease information
• Ways to connect with us and others affected by pituitary conditions in the Republic of Ireland.

🌐 www.pituitary.ie

We’d love to hear your feedback as we continue to grow and improve our support and services for the pituitary community in Ireland.

14/08/2026

REGISTRATION NOW OPEN for the 2026 Adrenal Patient Forum webinar
📅Saturday 21 November 2026
⏲️10:00 - 13:00 (CET)
📍Online via Zoom

Started in 2024 with the aim of responding to educational needs of patient community in the area of adrenal endocrinology, the 2026 Forum looks at health-related quality of life and preserving fertility in CAH across the lifespan.
Chairs: Hedi Claahsen Van Der Grinten (Netherlands) & Manuela Brösamle (Germany)
Speakers: Sofia Llahana (UK), Chris Blackett (UK), Laura Guazzarotti (Italy), Sallyann Blackett (UK), Nicole Reisch (Germany) and the patient experience provided by 'Elenaore'

🔗Programme and registration https://ow.ly/ogAB50Zw6pa