The 2024 Fanconi Cancer Foundation (FCF) International FA Support Group Summit, held on Sep 19, at the same venue as the Scientific Symposium in Charlotte, N. Carolina, brought together patient support group representatives from 17 countries to discuss advancements, challenges, and initiatives in the field of FA.
Key topics covered during the meeting included:
· FCF Highlights: FCF’s recent rebranding from the Fanconi Anemia Research Fund to reflect a broader cancer research focus. FCF has awarded 18 international grants since 2019 to support initiatives including diagnostics, awareness campaigns, and infrastructure improvements.
· Group Presentations: Representatives from multiple countries shared updates on their organisations. For instance, FA Support Australasia (FASA) focuses on missed FA diagnoses, while the Brazilian FA Association is actively supporting 600 individuals. Fanconi Canada supports oral cancer research, and Un Corazón por Fanconi in the Dominican Republic/Latin America is working to enhance FA diagnostics and access to treatment.
Several other countries shared updates, such as Denmark’s family meetings and newsletters, Egypt’s challenges with setting up patient support groups, and France’s new psychosocial study on the transition to adulthood for FA patients. The summit highlighted both regional successes and challenges, such as a lack of medical resources in Latin America and difficulties accessing treatment in South Africa.
· Fundraising Initiatives: Denmark and the Netherlands presented creative fundraising approaches, such as selling tomato plants and organizing a charity walk that raised €11,380. These funds were shared among Fanconi Europe, Fanconi Anemie the Netherlands, and FCF.
· Cancer Awareness and Self-Empowerment: As individuals with FA are living longer, thanks to medical advancements, the focus has shifted toward cancer prevention, particularly oral cancer. The Cancer Awareness Team, led by Eunike Velleuer-Carlberg and Christine Krieg, has pioneered oral brush biopsies to detect cancerous lesions, reducing invasive procedures by 75%. The team also offers training workshops and tools like videos, FA Wiki, and the FAexam app to empower patients and physicians.
Future Directions: The summit concluded with a focus on strengthening collaboration between international groups, hosting more virtual meetings, and continuing fundraising efforts. Key areas for future development include improving FA diagnosis, addressing bone marrow failure, and providing psychological support to FA patients. Expanding the international network was emphasised, along with the need for more collaborative initiatives and promoting achievements through videos and newsletters.
Participants were encouraged to share best practices and continue working toward common goals to improve the lives of individuals with FA.
This summit highlighted the global commitment to fighting FA, with diverse international efforts aiming to address both medical and psychosocial needs.
Countries Represented: Australia, Brazil, Canada, Denmark, Dominican Republic, Egypt, France, Germany, Israel, Italy, Mexico, Netherlands, South Africa, Spain, United Kingdom, United States, Zimbabwe.