Fragile X International (FraXI) is proud to begin 2026 by announcing the upcoming creation of Fragile Xchange, FraXI’s global digital platform designed to provide reliable, high-quality information and opportunities for learning, sharing, and research for individuals and families affected by Fragile X syndrome (FXS). 

The development of Fragile Xchange is being supported by a grant from Boston Scientific Foundation Europe (BSFE). The timing of this support is particularly significant, coming just ahead of the planned launch of the Fragile Xchange app and international registry, milestones that will further expand the platform’s reach and impact worldwide.

What is Fragile Xchange?

Fragile Xchange is FraXI’s international, online and app-based platform for the Fragile X community. It is being developed as a trusted, central hub where families (as well as clinicians and researchers) can access up-to-date information, share knowledge, and contribute to research.

The platform will ultimately include:

• Reliable, accessible information on Fragile X Syndrome
• An international registry designed to generate real-world evidence
• Collection of clinical and quality-of-life data
• The ability to roll out surveys through the app
• Resources for families and professionals worldwide

Together, these elements aim to improve understanding of FXS, support families wherever they live, and help drive research forward.

The project forms an important part of the wider Fragile Xchange platform and is delivered in two connected stages.

Stage 1: High-quality digital education
The grant supports the development of professional, digital-first educational materials that will be made freely available online, primarily via YouTube and the FraXI website. These expertly scripted videos will feature leading clinicians and experts and will cover key topics such as:

• Symptoms and diagnosis
• Fragile X genetics and inheritance
• Therapies and interventions
• Transitions into adolescence and adulthood

By the end of this stage, FraXI aims to create a library of approximately 10 short, accessible videos designed to help families and professionals better understand Fragile X syndrome. In addition, the project will gather and adapt materials from Fragile X organisations around the world to create a shared core resource library that national and local partners can use for training and awareness-raising. All content will be made available with automated AI translation to support global access.

Stage 2: Launch of the Fragile Xchange app
The second stage, which builds directly on this work, is the launch of the Fragile Xchange app. The app will bring together links to the new digital resources, the website, and YouTube content, making reliable Fragile X information easily accessible via mobile devices for families around the world.

What is Boston Scientific Foundation Europe (BSFE)?

Established in 2018, Boston Scientific Foundation Europe supports Europe-based non-profit organisations that improve health and well-being through innovative digital health solutions. BSFE focuses on projects that have lasting impact, particularly those that improve access to care and empower people to connect with digital resources that support both physical and mental health. To find out more, please click here. 

How will BSFE support FraXI?

BSFE’s grant supports Stage 1 of the Fragile Xchange project, enabling FraXI to develop content and materials to a high professional standard. The videos and resources will focus on practical, evidence-based information to support families-particularly those newly navigating a Fragile X diagnosis-and clinicians seeking clear, accessible explanations.

Our thanks

FraXI is deeply grateful to Boston Scientific Foundation Europe and its wonderful team for their trust and support. This grant represents an important step in strengthening Fragile Xchange as a reliable, global platform for the Fragile X community at a critical moment in its development.