A New Chapter for the MECP2 Duplication Syndrome Community: Introducing MDG

Today, we are proud to share something that has been months in the making.

MECP2 Duplication Global (MDG) is officially launched.

Throughout the month of July, as part of MECP2 Duplication Syndrome Awareness Month, voices from around the world came together around a simple message: “We are MDG.”

DupMECP2 est fier d’être l’un des membres fondateurs de MECP2 Duplication Global (MDG), une nouvelle alliance internationale réunissant des organisations engagées pour les personnes vivant avec le syndrome de duplication du gène MECP2.

Today, that voice becomes a reality.

Why MDG?

MECP2 Duplication Syndrome is a global condition. Families face similar challenges regardless of where they live: navigating complex medical needs, searching for reliable information, advocating for better care, and hoping for effective treatments.

For many years, patient organizations around the world have worked tirelessly to support families, raise awareness, and accelerate research. While each organization has its own history, community, and strengths, we all share the same goal: improving the lives of people living with MECP2 Duplication Syndrome.

MDG was created because we believe we can achieve more together than we can alone.

As highlighted throughout the July campaign, our community spans oceans, languages, and borders. By working together, our collective voice becomes stronger.

What is MECP2 Duplication Global?

MECP2 Duplication Global (MDG) is an alliance of non-profit organizations dedicated to MECP2 Duplication Syndrome advocacy.

By joining forces, we aim to strengthen international collaboration and coordinate efforts across awareness, research, family support, and clinical care.

Together, MDG seeks to:

• Accelerate progress toward new treatment options by supporting and connecting global research efforts.
• Encourage advances in clinical care and improve the sharing of knowledge across countries.
• Support families worldwide by strengthening collaboration between patient organizations and communities.
• Raise awareness of MECP2 Duplication Syndrome on a global scale.

Why Launch on July 28?

The launch date was chosen intentionally.

MDG officially launches on July 28, in recognition of the Xq28 chromosome band, the region of the X chromosome where the MECP2 gene is typically located.

For a community connected by a shared genetic diagnosis, this date represents both our common origin and our shared future.

What This Means for Families

For families affected by MECP2 Duplication Syndrome, MDG represents something simple but powerful: You are not alone.

Whether you live in Europe, North America, Asia, or elsewhere, you are part of a growing international community that is working together toward the same goals.

Throughout the July campaign, one message appeared again and again: every family has a story, but together our voices become one.

MDG is built on that idea.

By bringing organizations together, we can share resources, learn from one another, amplify awareness efforts, and ensure that families have access to a stronger global support network.

Looking Ahead

The launch of MDG is not the end of a journey. It is the beginning of a new one.

There is still much work to do. Research must continue. Access to care must improve. Families need support, information, and hope.

But progress happens when people come together. As we shared during the campaign, our time is now. Because when we unite our voices, we become stronger.

Read more

Visit the MDG website www.wearemecp2dupglobal.org to discover the organizations behind the alliance, explore upcoming initiatives, and learn how you can support global efforts for MECP2 Duplication Syndrome.

One voice. One worldwide movement. We are MECP2 Duplication Global.