Rare Disease Advisor

29/05/2026

🌟 This Month’s Rare Advocacy Spotlight: World Gastroenterology Organization (WGO) 🌟

The WGO plays a unique role in advancing Global GI Awareness and Patient Care. This month, we highlight their key programs, including World Digestive Health Day (WDHD): https://buff.ly/tChE6Nq

📩 Don’t miss next month’s edition! Subscribe now to get future features straight to your inbox: https://buff.ly/yLKxqn4

🙌 Shoutout to the leadership team for their work!

22/05/2026

It’s ! Let’s talk about Eosinophilic Esophagitis.

💡Rare? Yes. Underdiagnosed? Often. Chronic? Always.

Today, we join the to shine a light on EoE -- a food-driven immune condition that makes swallowing a daily challenge. From specialized diets to emerging biologics, the landscape of care is changing, but awareness is still our most powerful tool for early intervention.

What can you do?

1️⃣ Learn the signs (dysphagia, chest pain, feeding issues).
2️⃣ Share this post to educate your network.
3️⃣ Check out the latest updates: https://buff.ly/ImVHVj7

21/05/2026

We’re excited to spotlight the WGO World Digestive Health Day campaign. Help us amplify "Chronic Diarrhea: Don’t Flush the Signs Away" by posting tiles, posters, and videos on May 29th 2026! Share, tag, and help raise awareness: https://buff.ly/gCkUDaM

19/05/2026

WGO plays a truly unique role in public health by connecting Global Clinicians, Low-Resource Centers, and Policy Makers with the regulatory process. By connecting these voices and translating complex processes, the Foundation helps move innovation forward for patients.

📢 Want to learn how? 👉 Read the full Rare Advocacy Spotlight now: https://buff.ly/XV2jqCc

18/05/2026

Remission is possible in myasthenia gravis, but it is often unpredictable — and not always permanent.

This MG Companion article explains what remission can mean for people living with MG, including complete stable remission, pharmacological remission, and minimal manifestation status. It also reviews factors that may influence the likelihood of remission, such as age at onset, timing of diagnosis, MG subtype, antibody status, treatment approach, and thymectomy eligibility.

Read the full article: https://buff.ly/XOAdpl1

Around 40% of people living with MG achieve remission, meaning symptoms have significantly reduced or disappeared altogether.

18/05/2026

🌟 This Month’s Rare Advocacy Spotlight: WGO

🌟 WGO Health Test WDHD 2026

The Train the Trainers program, a WGO-led educational initiative, is celebrating its 25th anniversary this year. https://buff.ly/qQWms8w.

📩 Don’t miss next month’s edition of Rare Disease Advisor's Rare Advocacy Spotlight! Subscribe via https://buff.ly/yLKxqn4 .

The World Gastroenterology Organisation (WGO) is a federation of over 100 Member Societies and four Regional Associations of gastroenterology representing over 50,000 individual members worldwide.

18/05/2026

For people living with Pompe disease, endurance is not always visible from the outside.

In this Rare Disease Advisor patient column, Bruce Campbell reflects on riding the Absa Cape Epic while managing the hidden, minute-by-minute demands of Pompe disease — from effort and nutrition to hydration, risk, and control.

His story offers a powerful look at what it means to compete while managing a rare neuromuscular condition that others may not fully see.

Read the full article: https://buff.ly/rIWhZlK

Ride along with Pompe disease contributor Bruce Campbell on the Tour de France of mountain biking. In part 2: the struggle behind the race.

18/05/2026

💬 Notable Quotes from WGO

💡"Universal access to digestive health means providing tools that are evidence-based and resource-aware." -Prof. Carolina Olano, WGO President

💡"We are moving from data to doing." -Leadership Team

🔍Learn more about WGO and its programs: https://buff.ly/jAHmc8V

17/05/2026

After an HDFN diagnosis, medical care is only one part of what families may need.

In this HDFN Companion patient column, HDFN ambassador Taylor Jeans shares how a hospital social worker became a lifeline after her daughter’s birth, helping her navigate NICU logistics, postpartum recovery, lodging, transportation, and billing concerns while far from home.

Her story is a reminder that support services can play a critical role in helping families move from crisis to stability during an HDFN-affected pregnancy and newborn care experience.

Read the full article: https://buff.ly/EHKyfzF

HDFN ambassador Taylor Jeans describes how a social worker helped her recover alongside her baby after a caesarean delivery.

17/05/2026

A delayed diagnosis can change the entire trajectory of life with acromegaly.

In this Rare Disease Advisor patient column, Jackie Haggerty reflects on the enduring consequences of diagnostic delay, including multiple surgeries and the need for lifelong, multidisciplinary care.

Her story is a reminder of why earlier recognition of acromegaly symptoms matters — not only for diagnosis, but for long-term quality of life.

Read the full article: https://buff.ly/R8uABou

A delayed diagnosis of acromegaly can have enduring consequences, leading to multiple surgeries and lifelong multidisciplinary care.