The Bloom Syndrome Association (BSA) proudly announces the launch of our Global Ambassadors Program, an international network of dedicated volunteers representing the Bloom syndrome community across the globe.
The BSA serves people and families affected by Bloom syndrome from all over the world. Recognizing the unique needs our community faces in different countries/regions, we’ve established a team of Global Ambassadors to represent the BSA in designated countries, working to increase awareness, build community connections, and support individuals with Bloom syndrome – all in the native language of their country.
You can now meet our inaugural Global Ambassadors on our new Global Ambassadors webpage, where we celebrate their commitment and introduce their roles in strengthening the international Bloom syndrome community.
New Website Feature: To make our resources even more accessible to our global community, the BSA website now includes a Google Translate button, allowing visitors to view pages in many different languages.
What the Global Ambassadors Do
Our Global Ambassadors serve as vital connectors between the BSA and families, clinicians, and advocates around the world. Their work helps ensure that every person affected by Bloom syndrome — no matter where they live — has access to community, information, and support.
Key responsibilities of our Global Ambassadors include:
- Patient Outreach: Connecting with patients and families affected by Bloom syndrome in their country, facilitating access to resources, support, and the global Bloom syndrome community.
- Information Sharing: Serving as a liaison between the BSA and the local community, providing feedback on country-specific needs and communicating organizational updates.
- Awareness and Advocacy: Raising awareness of the BSA’s mission and patient needs through outreach campaigns, educational initiatives, and media engagement.
- Partnership Development: Collaborating with local healthcare professionals, researchers, policymakers, and others to improve access to care and support services.
- Event Support: Planning and executing regional initiatives such as Rare Disease Day activities, fundraising efforts, and support group meetings.
“Beyond Borders” — Building a Global Community
The inspiration for this new program grew out of the 2024 International Bloom Syndrome Conference in Frankfurt, Germany, whose theme – “Beyond Borders” -celebrated our shared commitment to connection, collaboration, and care across continents. The Global Ambassadors Program builds on that spirit, ensuring that the sense of togetherness from Frankfurt continues to grow and thrive throughout the year.
Looking ahead, the BSA’s goal is to identify and connect with 500 individuals with Bloom syndrome worldwide. Through our Global Ambassadors and our growing international partnerships, we are taking meaningful steps toward making that goal a reality – ensuring that no person with Bloom syndrome feels isolated or unseen, and every voice is heard.
We are deeply grateful to our ambassadors for volunteering their time and energy to this mission. Their leadership helps make the BSA’s work truly international, creating stronger connections among families, clinicians, and researchers worldwide.
Visit the Global Ambassadors webpage to meet the ambassadors and learn how you can get involved in your region. Together, we’re expanding hope and support across borders – one family at a time.