International Gaucher Alliance

International Gaucher Alliance The IGA is an international umbrella group representing the interest of Gaucher Patients and non for profit Gaucher Patient Groups throughout the world.

The IGA is an international umbrella group representing the interests of Gaucher patients and those of non-for-profit Gaucher patient groups as well as rare disease groups throughout the world. Why do we need an international umbrella group? The working together of Gaucher patient groups has already lead to consistency in treatment of certain manifestations of Gaucher Disease throughout Europe. Inspired by this and by their successes in achieving humanitarian aid for the most severe patients in Eastern Europe member countries of the IGA have grasped the challenge of collaboration for the further advantage of Gaucher Patients. Although the most common Lysosomal Storage Disorder Gaucher Disease is very rare with an incidence of about 1 in 100,000 live births. Patient Groups have worked closely together to share their experiences and to facilitate access to treatment. Scientists and Clinicians throughout the world increasingly collaborate both in research and in the development of strategies for the management of the disease. Pharmaceutical companies are Global and clinical trials are frequently multi-centred with treatments being approved in different countries worldwide, while in others patients are not able to benefit from them. Patient Groups throughout the world cannot work in isolation and their alliance by joining the IGA provides a clear global voice of representation and opportunity for advancement.

A family from Afghanistan shares a story of devastating loss, but also of hope.“When our daughter Kainat became seriousl...
05/10/2026

A family from Afghanistan shares a story of devastating loss, but also of hope.

“When our daughter Kainat became seriously ill, we travelled from one hospital to another searching for answers. Doctors suspected Gaucher disease, but there was no testing or treatment available in Afghanistan.

We searched everywhere for help. In Afghanistan, we have a saying: ‘A drowning person will even reach for foam.’ That is how desperate we felt.

Then we found the International Gaucher Alliance. Tanya never gave us false hope, but she gave us something just as important – kindness, honesty and support. At a time when we felt forgotten, we were reminded that we were not alone.

Sadly, our beloved Kainat passed away before she could receive the diagnosis and treatment she needed.

Today, we have a newborn son. With the support of the IGA and Sanofi, he will have the opportunity to be tested early. We pray that this will give him a healthier future.

We share Kainat’s story so that more families can find help sooner – and so that no child loses their life simply because diagnosis or treatment is unavailable.”

Wherever you are in your Gaucher journey, we are here to support you.

¿Cómo diagnosticar la enfermedad de Gaucher tipo 3?Con la participación del Dr. Nicolás Fernández Escobar y la Dra. Aime...
05/10/2026

¿Cómo diagnosticar la enfermedad de Gaucher tipo 3?

Con la participación del Dr. Nicolás Fernández Escobar y la Dra. Aimee Donald.
📅 15 de octubre de 2026
🕛 12:00 hora Buenos Aires (16:00 hora Reino Unido)
📲 Escanee el código QR para registrarse o haga clic en el enlace de nuestra historia para completar su registro.
¡Esperamos verlos allí!

Wherever you are in your Gaucher journey, we are here to support you.Shahed is 16 and lives in Syria. When doctors suspe...
02/10/2026

Wherever you are in your Gaucher journey, we are here to support you.

Shahed is 16 and lives in Syria. When doctors suspected Gaucher disease, her family were told that confirmatory testing and treatment were not available in their country.

Searching for answers, they found the International Gaucher Alliance and reached out for help. Their journey is still ongoing, and the IGA is supporting the family as they navigate the path towards diagnosis and care.

“The support, compassion, and commitment we have received from the IGA have given us hope and reminded us that we are not facing this journey alone.”

Shahed’s story is Equity in Action – helping families access support, wherever their Gaucher journey begins.

Today, on International Gaucher Day, this year’s theme of Equity in Action is particularly close to my heart.I may be th...
01/10/2026

Today, on International Gaucher Day, this year’s theme of Equity in Action is particularly close to my heart.

I may be the CEO of the International Gaucher Alliance today, but my journey into Gaucher advocacy began over 30 years ago for one very personal reason — my daughter Maddie, who lives with Type 3 Gaucher disease.

That experience has shaped everything I believe about what equity should mean for our global Gaucher community.

Where you live in the world should not determine the care you receive.

Everyone affected by Gaucher disease should have the opportunity to:
• receive an accurate and timely diagnosis
• see a doctor who understands Gaucher disease
• receive good, appropriate care
• access the treatment they need
• have information and support for themselves and their family
• and, ultimately, have the opportunity to live their best possible life.

Sadly, we know that this is not yet the reality for everyone.

Every day, we hear from individuals and families facing barriers simply because of where they live — barriers to diagnosis, expertise, treatment and care. That is why equity cannot just be something we talk about. It has to be something we act upon.

At the IGA, together with our patient organisations, Gaucher leaders, the International Working Group on Gaucher Disease (IWGGD), healthcare professionals, industry partners and many other stakeholders, we are working every day to change this.

Sometimes progress comes through big changes. Sometimes it is one patient receiving a diagnosis, one family finding the right doctor, or one person finally gaining access to treatment.

Every step matters.

More than 30 years after my own Gaucher journey began with Maddie, my determination has not changed.

There is still much more to do. And we will not give up.

Wherever you are in your Gaucher journey, we are here to support you.

There is no single route through Gaucher disease.For some, the journey begins with a feeling that something is wrong. Fo...
01/10/2026

There is no single route through Gaucher disease.

For some, the journey begins with a feeling that something is wrong. For others, it is searching for answers, receiving a diagnosis, finding treatment, living with Gaucher disease or supporting someone they love.

And where you live can shape that journey too – including the diagnosis, care, treatment and support available to you.

This International Gaucher Day, our theme is Equity in Action: working towards a world where everyone affected by Gaucher disease can access the information, care and support they need.

Wherever you are in your Gaucher journey, we are here to support you.

Join us on 1 October for International Gaucher Day 2026.

🎙️ NEW GAUCHER VOICES EPISODEWhat does the future of patient advocacy look like?In our latest Gaucher Voices episode, we...
29/09/2026

🎙️ NEW GAUCHER VOICES EPISODE

What does the future of patient advocacy look like?

In our latest Gaucher Voices episode, we explore the importance of sustainability, succession planning and developing the next generation of patient advocates. 🌍💚
Creating opportunities for new voices, sharing knowledge and empowering future advocates is vital to ensuring patient organisations continue to grow, evolve and make a lasting impact.
🎧 Listen to the latest episode:
tiny.cc/gauchervoices

🧬 TOMORROW: Venglustat Clinical Trial Results in Gaucher Disease Type 3 (GD3)Join us tomorrow for an important webinar e...
28/09/2026

🧬 TOMORROW: Venglustat Clinical Trial Results in Gaucher Disease Type 3 (GD3)

Join us tomorrow for an important webinar exploring the Venglustat clinical trial results in Gaucher disease type 3 (GD3), presented by Prof. Pramod K. Mistry.

📅 29 September 2026
⏰ 16:00–17:00 London time
🌍 Live translated captions available via Zoom

There’s still time to register! Scan the QR code or follow the registration link in our Story.

We hope you can join us 💙

Understanding behavioural challenges in Neuronopathic Gaucher Disease (nGD) Now available to watch on our youtube!In thi...
24/09/2026

Understanding behavioural challenges in Neuronopathic Gaucher Disease (nGD) Now available to watch on our youtube!

In this video, Dr Aimee Donald explores behavioural challenges associated with nGD, sharing valuable insights to help families, caregivers and the wider Gaucher community better understand and support those affected.

🎥 Watch the full video on our YouTube channel — Scan QR code to watch or link on our story.
💙 Please share to help this important information reach more of our community.

Join the IGA CouncilCould you help shape the future of the global Gaucher community?The International Gaucher Alliance i...
23/09/2026

Join the IGA Council

Could you help shape the future of the global Gaucher community?

The International Gaucher Alliance is looking for committed patient advocates to join our Council.

We are looking for people who can bring their experience, ideas and perspectives to help guide the IGA’s strategy and ensure that the voices and needs of people affected by Gaucher disease around the world remain at the heart of our work.

We particularly welcome people with experience in patient advocacy — whether through a national patient organisation, volunteering with the IGA, or other patient or community advocacy activities.

Interested? We would love to hear from you.

📅 Apply by: 21 October 2026
📱 How to apply: Scan the QR code.

Scan the QR code to read the full Council Member Role Description and apply.

🌍 Don’t miss out on our exciting upcoming IGA webinars this September!We have three fantastic webinars coming up, bringi...
18/09/2026

🌍 Don’t miss out on our exciting upcoming IGA webinars this September!

We have three fantastic webinars coming up, bringing together leading experts to share the latest developments, research and insights in Gaucher disease.

🧬 22 September | 15:00–16:00 London Time
Gene Therapy for Gaucher Disease
GALILEO – 1/2/3 Clinical Trial Programme Updates

💙 24 September | 16:00 London Time
Gaucher Disease Type 3: Overview and Update

🔬 29 September | 16:00–17:00 London Time
Venglustat Clinical Trial Results in Gaucher Disease Type 3 (GD3)

Whether you’re a patient, family member, healthcare professional or part of the wider Gaucher community, we hope you can join us.

📲 Swipe & scan the QR codes to register.

Save the dates and don’t miss out! 💙🌍

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EC2A4NE

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