Minneapolis, Minnesota | September 25–27, 2025

Nearly 300 members of the global Fanconi anemia community gathered in Minneapolis for the 2025 Scientific Symposium and Retreat for Adults with FA, three days that blended science, lived experience, and hope.

Attendees joined from 18 countries across six continents, representing Argentina, Australia, Canada, Denmark, the Dominican Republic, Germany, Kenya, Mexico, the Netherlands, Pakistan, South Africa, the United Kingdom, the United States, France, Spain, Egypt, Israel, Brazil, Poland, and Portugal.

Community Voices Lead the Way

The meetings opened with a joint town hall that united adults with FA, caregivers, clinicians, and researchers. In heartfelt discussions, individuals with FA shared the realities of daily life with the condition, reminding all in attendance that every scientific advancement begins with real, human experiences.

At the Retreat for Adults with FA, sessions focused on quality of life and access to care. A standout mental health discussion emphasized the need for accessible, FA-informed support and highlighted emerging efforts to connect community members with specialized providers.

Cancer prevention was another central theme. Researchers from the NIH, Germany’s Cancer Awareness Team, and The Rockefeller University shared updates on cancer screening initiatives, while Dr. Agata Smogorzewska previewed the upcoming cancer prevention study. Many attendees participated in on-site oral screenings, underscoring the event’s practical and preventive focus.

“Science doesn’t move forward without community, and community is stronger because of the science.” – attendee 

Members of the FCF Patient Advocacy Program also made history this year, presenting posters for the first time that explored advocacy’s impact on health and daily life. Advocates led panels and spoke alongside researchers, strengthening the bridge between lived experience and scientific discovery.

And of course, no global gathering is complete without a little celebration. The after-party hosted by the German Team was a hit! It was complete with traditional foods and drinks, a lively photo backdrop (featuring some legendary poses), spontaneous singing, and plenty of dancing. 

Shaping the Future of FA Research

At the Scientific Symposium, collaboration took center stage. And behind the scenes, the Scientific Advisory Board (SAB) met to refine FCF’s scientific strategy, focusing on the FA Cancer Consortium and Gene Editing Initiative.

The first in-person FRIENDS Executive Committee meeting marked another milestone. The group’s discussions advanced data harmonization and helped identify top priorities for the FA Research Data Commons, ensuring a unified, global approach to FA research.

International Summit

This year’s International Summit brought together researchers, clinicians, and patient support group leaders from across Europe, Africa, North and South America, and beyond. The exchange of ideas across borders continues to be one of the greatest strengths of this community, and it was inspiring to see collaborations forming in real time.

Discussions spanned topics from cancer prevention to emerging genetic therapies, reflecting a shared commitment to ensuring that progress in FA research benefits individuals and families everywhere. The energy and openness of the Summit embodied what makes the FA community truly global.

Dive Deeper into the Science

Two keynote speakers showcased groundbreaking research shaping the future of cancer and FA biology.

Dr. Siyuan (Steven) Wang, PhD presented “Chromatin Tracing and the Evolution of Single-Cell 3D Genomes in Kras-Driven Cancer.” His work revealed stage-specific changes in 3D genome organization as cancer progresses, offering new pathways to potential diagnostic biomarkers.

Dr. Mike Spencer Chapman, PhD shared insights on “Clonal Dynamics of Stem Cell Transplantation.” His study uses somatic mutations as clonal markers to track donor and recipient cell behavior over time—findings that may guide improved transplant strategies.

Poster Award Highlights

• Best Basic Poster – Cecilia Ayala-Zambrano: Loss of FANCA modifies the 3D organization of the genome in squamous carcinoma cells. FANCA deficiency was shown to alter genome architecture, increasing translocations and new gene fusions.
• Best Translational Poster – Colette Rogers: In vivo correction of a genetically humanized FA murine model using digital editing technologies. Demonstrated proof-of-concept for in vivo gene editing in bone marrow stem cells for FA.
• Best Clinical Poster – Luitpold Distel: Radiosensitivity in patients with breast cancer risk genes in comparison to Fanconi anemia. Found that radiation sensitivity among individuals with certain breast cancer risk genes was modestly higher than average but variable.

Recognizing Excellence and Commitment

The meetings also honored outstanding contributions across the FA community:

• Lifetime Achievement Award: Dr. John Wagner—Professor of Pediatrics and Founding Director of the Institute for Cell, Gene and Immunotherapies at the University of Minnesota—for his pioneering leadership in FA research and cell therapy.
• Winn/Byrd Award for Adults with FA: Fatma Isaak, with Louise Dalgleish as first runner-up.
• Award of Appreciation: Kidz1stFund, recognized for its extraordinary commitment to FA research. Every dollar raised supports research at the University of Minnesota, totaling more than $13.6 million, while 7,700 individuals have joined the national marrow registry through its drives.
• David B. Frohnmayer Early Investigator Award: Dr. Lisa McReynolds for her promising work advancing FA science.

Looking Ahead

The 2025 meetings captured what defines the Fanconi Cancer Foundation community: collaboration, compassion, and shared purpose.

From deeply personal discussions about mental health to forward-looking conversations on data sharing and gene editing, the Symposium and Retreat demonstrate how community and science move forward together.

We look forward to seeing you in Phoenix, Arizona, October 1-3, 2026!