3rd Annual COL4A1-A2

International Conference

to be hosted spring

2026 in boston, usa!

We are pleased to announce that The Gould Syndrome Foundation, in partnership with Associazione Famiglie COL4A1-A2, will host the International Conference in the United States in spring 2026. This marks the inaugural occasion for the conference to be held in the United States, presenting a valuable opportunity for community members to engage in person, connect with other parents and individuals affected by COL4A1-A2, and meet members of our Scientific and Medical Advisory Board along with key contributors to ongoing research efforts regarding this rare condition.

Medical conferences serve as critical catalysts for advancing research and treatment development within the rare disease community. These gatherings create essential platforms where researchers, clinicians, patients, and families can share knowledge, discuss emerging findings, and identify collaborative opportunities that might otherwise remain undiscovered.

For rare diseases like COL4A1-A2 disorders, conferences become particularly vital in consolidating expertise and accelerating scientific progress. The collaborative environment enables researchers to present findings, receive peer feedback, and form interdisciplinary partnerships that enhance their work's scope and impact. Clinicians gain access to the latest therapeutic approaches, while patients and families contribute invaluable insights that inform research priorities.

Furthermore, these events establish long-term partnerships between academic institutions, pharmaceutical companies, and patient advocacy organizations, frequently resulting in increased funding opportunities, expanded patient registries, and coordinated multi-site studies. In the rare disease landscape, where traditional market incentives may be insufficient, the community-building aspect of conferences becomes instrumental in maintaining momentum toward therapeutic breakthroughs.

We look forward to sharing this exciting experience with our community, more details to come regarding FAQ’s, conference dates, travel & lodging, and fundraising how-to’s!

Volunteer with us

The success of our upcoming International Conference depends on the dedication and commitment of our incredible volunteer community. Our foundation is built on individuals who serve as the heart and soul of our mission, bringing diverse expertise and unwavering passion to make meaningful change possible in the rare disease community.

This conference represents a significant milestone for COL4A1-A2 families and researchers, and we need passionate volunteers to help bring this vision to life. Every aspect of this event—from coordinating logistics to connecting our global community—relies on individuals who generously give their time and talents to drive our mission forward.

If you're looking for a way to make a real impact in our community, we invite you to join our volunteer team and help make this conference a resounding success. Your contribution will directly support groundbreaking research, foster essential connections, and provide hope to families worldwide.

We are currently seeking volunteers with experience in the following areas:

  • Fundraising

  • Community Outreach

  • Social Media Management & Moderation

  • Website Management (Squarespace adept)

Please fill out the form to learn more about how you can be of service to our Foundation and help shape this important event. We can't wait to hear from you!

Select members of our SMAB speak to the Importance of the conference

  • Doug Gould

    “It is impossible to overstate the value and importance of the international gatherings of clinicians, scientists, and patients that have been initiated by Simona, Francesca and the Associazione Famiglie COL4A1-A2. There are tangible benefits to all stakeholders of this community. Patients and families learn more about the disease, scientists share unpublished data and coordinate their efforts, and clinicians  open lines of communication on how best to manage their patients. These elements are important for any disease and you can see examples of disease-focused meetings everywhere you look. But it is even more critical for a rare disease where the community is small and scattered across the globe and for a newly discovered disease for which so much remains unknown. Continuing and growing these international exchanges will be vital to identifying future treatments. We need everyone pulling on the same rope in whatever capacity they can.”

  • Dr. Rachel Vassar

    "The opportunity to meet with patients, researchers, and clinicians from around the world is the single most important driver of forward progress in COL4A1/2-related disorders."