A Global Commitment to Care
Born in Zanzibar and now living in New York, Fatma has dedicated herself to improving how healthcare is experienced, not just delivered.
She currently works as a medical scribe at an OB-GYN clinic, supporting patients through deeply personal moments such as high-risk pregnancies and cancer screenings. She also serves on the Patient and Family Advisory Council at the Meyer Cancer Center through Weill Cornell and NewYork-Presbyterian, helping to make hospital systems more compassionate and inclusive.
“Healing extends beyond treatment plans,” Fatma shared. “It lies in creating spaces where patients feel safe, seen, and empowered, even in the face of uncertainty.”
In her hometown of Zanzibar, Fatma has volunteered in rural clinics, offering encouragement to people who often face limited access to care. “A simple act of kindness,” she said, “can radically shift a patient’s experience.”
Leading Through Empathy
Fatma’s leadership isn’t loud; it’s deeply human. She leads by listening: to patients, to researchers, and to peers in the FA community. Fatma received many nominators for this award who describe her as “a bridge between the patient world and the scientific world,” someone whose voice and empathy “improves how we conduct research, deliver care, and reminds us why we do this work.”
Her brother, Hisham, sees that same strength at home.
“Fatma often leads by example. Throughout her life, she holds others to the same standards she holds herself which is often inspiring. She is always transparent, empathetic, and leads from within.”
Whether in a research setting, a hospital, or a community meeting, Fatma’s steady presence brings people together and reminds them that care begins with compassion.
A Voice for Advocacy and Hope
Advocacy has become a defining part of Fatma’s journey. Through her work with FCF and the broader rare disease community, she’s used her voice to raise awareness and build connection.
“Having been a patient myself, I know how heavy those moments can feel,” Fatma shared in her acceptance speech. “It means a lot to ease that weight, even in small ways.”
She also reflected on the people who have guided her:
“I wouldn’t be standing here without the people who have stood beside me. You’ve shown me what resilience looks like and reminded me why it’s worth continuing to speak up and fight for change.”
Her humility, gratitude, and clarity of purpose inspire everyone around her, a reflection of the FA community’s strength and shared hope.
Looking Ahead
For Fatma, this recognition is not an ending but a beginning. She plans to attend medical school and continue working toward her dream of transforming healthcare for underserved communities around the world.
Her mother, Zaitoon, summed it up perfectly:
“Fatma demonstrates leadership in empowering others and showing them that Fanconi anemia is not a reason to let your dreams drift away. Anything is possible if you truly set your mind to it.”
As she moves forward, Fatma carries the legacy of Amy Frohnmayer Winn and Christopher Byrd, two leaders who lived with courage, joy, and purpose. She continues that legacy with grace, empathy, and a belief in the power of human connection.
Congratulations, Fatma. Your compassion, strength, and vision inspire us all!
Louise Dalgleish Receives Second Place
Louise strives to shift perceptions of adults with Fanconi anemia beyond their medical conditions and works alongside clinicians and researchers to improve patient experiences. She’s passionate about highlighting the ambitions and everyday challenges faced by individuals with FA, advocating for understanding, equity, and support within the medical community.
Louise is also deeply committed to increasing accessibility and inclusion for LGBTQ+ individuals in healthcare. Through her recent collaboration with Pfizer’s OUTpatients campaign, she shared her experience as an LGBTQ+ person living with a rare disease, bringing visibility and awareness to an often-overlooked intersection of identities.
A dedicated member of FCF’s FAdult Council and Advocacy Program, as well as a spokesperson for Fanconi Hope, Louise uses her voice to uplift others and inspire change. Congratulations, Louise! Your courage and advocacy strengthen the entire FA community.
