Lucia Santistevan, M.D. is an OB/GYN resident originally from Lima, Peru. She has a strong academic and personal interest in Moebius syndrome, having published her thesis on the condition in her home country and remaining actively engaged with the latest research developments. A dedicated volunteer with the Moebius Syndrome Foundation for many years, Dr. Santistevan is passionate about raising awareness and supporting the community.

Currently in her OB/GYN residency, she hopes to integrate genetics and preventive medicine into her future practice as an OB/GYN, aiming to improve care and outcomes for diverse patient populations.

Dr. Santistevan resides in Bronx, New York.

Tell us your name and position (executive committee, staff, board member). 

Lucia Santistevan MD – Board Member

Why is it important for you to serve on the Board of Directors? 

I am eager to join the Board of Directors because I wholeheartedly believe in the mission of this organization. As someone who has firsthand experience living with Moebius syndrome, combined with my research in this area, I am deeply committed to contributing to meaningful change. Additionally, my background in the medical field equips me with valuable insights and tools to collaborate effectively and help further the organization’s impact in both the medical and advocacy communities.

What does the Moebius Syndrome Foundation mean to you, personally?

To me, the Moebius Syndrome Foundation represents inclusivity, respect, and a source of hope for individuals and families affected by this condition. It’s a community where people come together to raise awareness, provide support, and inspire positive change for those living with Moebius syndrome.

What might the Moebius Syndrome Foundation community be interested to learn about you? 

I am originally from Peru. I am a physician currently training as an Obstetrics and Gynecology resident, and I am deeply committed to contributing to this foundation. Through my medical training, I have gained valuable skills and knowledge that I hope to apply in meaningful ways to support the Moebius syndrome community and help drive the foundation’s mission forward.

What do you want the Moebius Syndrome community to know about the Board of Directors and what we do?

The Board of Directors is dedicated to raising funds to support vital research on Moebius syndrome and to provide resources that help individuals and families affected by this condition navigate their journey more smoothly. We strive to raise awareness, promote inclusivity, and foster a supportive community where everyone feels seen, heard, and empowered.

Anything else you would like to add? Any long-term goals for the Foundation? Can community members reach out to you if they have any questions or comments about the Foundation or ideas they may have?

I’m always happy to connect! Please feel free to reach out with any questions, ideas, or research opportunities. I’m very open to discussions and would love to collaborate with community members to continue advancing the mission of the Foundation. Building connections and sharing ideas is how we create meaningful change, and I look forward to hearing from you!

Email : lucia@moebiussyndrome.org