Fanconi Canada

07/17/2026

07/15/2026

The Endocrine Disorders in People with Fanconi Anemia chapter of our Clinical Care Guidelines has been updated with the latest evidence and clinical recommendations.

Because endocrine disorders affect approximately 80% of people with Fanconi anemia, staying current with screening and management recommendations is essential for providing comprehensive, lifelong care.

Highlights of the update include:
• Expanded guidance on dyslipidemia and obesity
• New advances in the treatment of growth hormone deficiency
• Significantly enhanced information on fertility and fertility management

Our Clinical Care Guidelines are developed by international experts and are regularly updated to reflect the latest research and best practices in FA care.

Read the updated chapter:
https://fanconi.org/clinical-care-guidelines/endocrine-disorders-in-patients-with-fanconi-anemia/

07/09/2026

July is Bereaved Parents Awareness Month, a special time to honor the parents, families, and loved ones who are grieving the loss of someone with Fanconi anemia.

Every person with FA leaves behind a story and legacy that deserves to be remembered.

If you'd like to honor your loved one by sharing their story, we'd be honored to help tell it. Stories may be featured on our website, in emails, or on social media to celebrate their life and the impact they continue to have on our community.

❤️ Share your story: https://fagroupeval.formstack.com/forms/community_story_share

Your loved one will always be part of the FA community.

06/17/2026

📢 Registration is now open for the biggest FA gathering in the world!

Join researchers, clinicians, individuals living with FA, and family members from around the globe as we come together to share the latest discoveries, build connections, and help shape the future of FA care and treatment.

🧬 2026 FA Scientific Symposium & Adult Retreat | October 1–3, 2026

👩‍🔬 Externally-Led Patient-Focused Drug Development (EL-PFDD) Meeting | October 3, 2026

Learn more and register today to save your spot 🔗 https://shorturl.at/IfaQS

06/16/2026

Fanconi Cancer Foundation's Retreat for Adults with FA takes place October 1-3 in Phoenix, Arizona

The Retreat offers individuals with FA ages 18 and older an opportunity to connect with peers, learn about the latest research and medical updates, and take part in supportive conversations about navigating adulthood with FA. Dedicated sessions also provide resources and support for caregivers.

The Retreat is an in-person only experience, except for an Externally Led Patient-Focused Drug Development (EL-PFDD) hybrid meeting for individuals with FA and caregivers to share what daily life including experiences with cancer, long-term health effects, and care decisions to help inform future research and treatment development. More info on FCF's EL-PFDD at https://fanconi.org/pfdd/.

For details or to register visit https://fanconi.org/retreat-for-adults-with-fa/

The Retreat runs in parallel with the 2026 Scientific Symposium.

The Adult Retreat for individuals with FA takes place every year in varying cities during the fall season. This unique event caters to individuals with FA aged 18 and above, offering them a platform to connect with peers, stay informed about the latest medical advancements and research findings, eng...

05/15/2026

Le Pr Eliane Gluckman et Matthew Farrow se sont retrouvés à Gdansk pour évoquer cette 1ere greffe de sang de cordon ombilical réalisée à l'Hôpital Saint Louis en 1988 (il avait 5 ans).
Il en fallait de l'audace... 💪
Entre 1988 et 2021, plus de 200 greffe de sang de cordon ombilical ont été réalisées pour la maladie de Fanconi, réparties dans 77 centres de greffe!

05/03/2026

May marks International Fanconi Anemia Awareness Month.

FA Families established International FA to increase awareness of FA and raise funds to support for medical research towards safer and more effective treatments.

Your donation will help propel us
towards a cure.

This organization is designated by Canada Revenue Agency (CRA) as a registered charity. They comply with the CRA's requirements and have been issued a charitable registration number.

03/04/2026

🎉 100 participants enrolled in the NIH Fanconi Anemia Cancer Screening Study!

The NIH team marked this milestone with a celebration, and we’re celebrating, too. This study would not be possible without our community and the support that makes our work possible.

Because of this progress, 100 people with FA now have access to specialized cancer screening and expert care through this clinical trial. That matters.

We’re grateful to everyone who helped make this moment possible. And we’re not stopping here.

If you or someone you know is living with FA and may be interested in participating, learn more about the study here: https://marrowfailure.cancer.gov/fanconi-anemia/

Let’s keep going and reach the next 100!