World Hormone Day

08/10/2026

MORE THAN YOU SEE | LENNON

Some stories don't need spoken words.

Lennon is a true bookworm at heart.

His mom shared that while he may not use spoken words, his world is overflowing with stories, imagination and wonder. He loves cozying up for storytime and sharing his favorite books with the people around him.

And she offered a beautiful reminder about getting to know Lennon:

“If you pay close attention, he'll tell you the most extraordinary tales,you just have to listen with your heart instead of your ears.”

Communication can look different.

So can storytelling.

Sometimes seeing more begins with learning to listen differently.

Every share, conversation and donation helps us continue our mission and bring greater awareness to MCT8 Deficiency.

💙 Donate: https://www.mct8.info/donate/
💙 Meet our families: mct8.info/families
💙 PayPal: [email protected]
💙 Walmart Spark Good: Select MCT8-AHDS Foundation

08/10/2026

24/08/2026

🧬 "It's Not You, It's the Variant."

Genetic results can change over time — and that can be confusing and unsettling. Join Dr. Samantha Greenberg and Alexa Badalamenti from UT Southwestern's PPGL Clinical Center of Excellence on Thursday, August 27th at 9:30 am PST/12:30 pm ET to unpack why reclassification happens and what it means for you and your care team.

Hosted by the Pheo Para Alliance and proudly sponsored by Curirum. Save your spot — register with the following link: https://pheopara.org/2026/08/2026-awareness-week-event-its-not-you-its-the-variant-when-genetic-results-get-reclassified.

24/08/2026

PHAEO PARA AWARENESS WEEK - 24-28 AUGUST

Today marks the start of the 2026 Phaeo Para Awareness Week and to kick off, we wanted to share the inspiring story of Hannah who has the hereditary paraganglioma syndrome, SDHC.

Hannah is a firefighter in the Northeast of the UK. Her Christmas present in 2022 was to find a lump in her neck. Read about how Hannah reacted to her diagnosis and later, her radiotherapy treatment.

We think she's completely inspiring!

Find this and other patient stories on our dedicated Phaeo Para website:

📲 https://phaeoparasupport.org.uk/patients/patient-experience-stories/

03/08/2026

The 7th Pheo Para Awareness Week will take place from 24-28 August 2026.

A key part of the Week's events will be the Pheo Para Alliance (PPA) Educational Webinar:
"It’s Not You, It’s the Variant: When Genetic Results Get Reclassified"
When: 18:30-20:00 27 August, 2026
Where: Online via Zoom

What to expect
As scientific research advances and more individuals undergo testing, new data may lead to reclassification of previously reported genetic variants—including variants of uncertain significance (VUS).

Speakers will explain why genetic classifications evolve, what reclassification means for patients and families, and how healthcare teams can support clear communication and appropriate follow-up. The discussion will focus on reducing uncertainty, strengthening patient-provider communication, and supporting informed decision-making as genetic knowledge continues to grow.

Register now 👉 https://pheopara.org/2026/08/2026-awareness-week-event-its-not-you-its-the-variant-when-genetic-results-get-reclassified
Find out more 👉 https://pheopara.org/

24/07/2026

July is Parathyroid Disease Awareness Month 💚

ESE is proud to partner with several Patient Advocacy Groups supporting people affected by parathyroid conditions. Together, we are helping to raise awareness, amplify patient voices and improve understanding of these often overlooked disorders

Learn more and access patient resources 👉 https://www.ese-hormones.org/membership/organisational-memberships/patient-advocacy-group-affiliate-members/calcium-and-bone-pag-community/

24/07/2026

Understanding disability burnout in Osteogenesis Imperfecta 🤯
Living with (OI) comes with unique challenges, some visible, some not. One of those challenges is disability burnout, a real and often overlooked experience.

What is Disability burnout?
In this interview, Raul Krauthausen from Germany 🇩🇪 explains the exhaustion that comes from constantly adapting to a world that isn’t always built for accessibility or inclusion. For people with OI, it might mean pushing through pain, advocating for accommodations, or managing daily tasks differently. It isn’t just about physical tiredness, it’s emotional, mental, and sometimes even social. Recognizing it is the first step towards self-care and support.

Why it matters during Disability Pride month?
Disability Pride Month is about celebrating identity, not just resilience. Burnout is a real part of many disabled lives, including those with OI. This article helps us recognize it, talk about it, and support each other.

🔗Read the full article on our website: https://oife.org/2023/08/27/oi-disability-burn-out/

04/06/2026

Scientific research continues to strengthen our understanding of how exposure to endocrine disrupting chemicals (EDCs) affects people, wildlife and ecosystems. By advancing knowledge, raising awareness and supporting evidence-based decision-making, we can help reduce hazardous exposures and contribute to a healthier, more sustainable future.

03/06/2026

🌱 EU Green Week 2026 highlights the importance of investing in a nature-positive economy—and that means investing in human health too.

Endocrine-disrupting chemicals (EDCs) are found throughout our environment and can interfere with hormone systems, affecting health across the life course. Reducing exposure to these harmful substances is essential for protecting current and future generations.

We call for a strong, science-based EU regulatory framework that identifies, restricts and reduces exposure to EDCs across Europe. Effective regulation is key to creating healthier environments, supporting sustainable innovation and building a truly nature-positive economic future.

Watch the livestream sessions here: https://green-week.event.europa.eu/index_en

01/06/2026

Today is !

We join the global community in raising awareness of hypoparathyroidism and the impact this rare endocrine condition can have on daily life.

At ESE, we are committed to supporting patients and their support networks through education, awareness and collaboration with patient organisations across Europe.

Please join us for our 2026 Hypopara Patient Forum on 26 September, more info here 👇
www.ese-hormones.org/hypoparapatientforum2026