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NYC Health + Hospitals/Metropolitan Recognizes Rare Disease Day 2020 with the Publication of You Are Extraordinary/Ustedes Son Extraordinarios Book and Exhibition

The project celebrates the diversity of patients with rare genetic conditions

Book and exhibit features photographs of NYC Health + Hospitals/Metropolitan patients by award-winning photographer Rick Guidotti

Feb 28, 2020

New York, NY

In recognition of Rare Disease Day 2020, NYC Health + Hospitals/Metropolitan today published, You Are Extraordinary/Ustedes Son Extraordinarios, a book and exhibition celebrating the diversity of children and adults with rare genetic conditions. The book features photographs by award-winning photographer Rick Guidotti. Rare Disease Day, held at the end of February annually since 2008, raises awareness about rare diseases and their impact on patients’ lives. The book is comprised of patients from NYC Health + Hospitals/Metropolitan’s Genetic Division. Posters with photos and short biographical sketches from the book were displayed throughout the hospital as part of the annual commemoration of Rare Disease Day.

Events are organized locally and around the world to recognize Rare Disease Day, with events taking place in over 100 countries. At NYC Health + Hospitals/Metropolitan, other activities included a resource fair with information booths, a short program featuring presentations from patient advocates and experts, and a celebration for patients and their families.

“At NYC Health + Hospitals/Metropolitan, everyone shares the same philosophy regarding patient care and the involvement of family and the larger community. Our greatest successes are in joining our patients on their journeys, sharing their joys and learning from them,” said Maryam Banekazemi, MD, Director of the Genetics Division at NYC Health + Hospitals/Metropolitan. “I want our patients to remember that they are surrounded by friends and supporters, with a fervent belief that as a community we can help them enjoy their lives. This book is an expression of that hope.”

“This project illustrates the core values of our mission: change how you see, see you how change,” said photographer Rick Guidotti. “Working with these ambassadors and advocates was an enriching and educational experience, as each and every supermodel was proud to have their own voice and visibility.”

Rick Guidotti has spent over twenty years collaborating internationally with nonprofit organizations, hospitals, medical schools, educational institutions, advocacy groups and communities to promote a more inclusive and compassionate world where all differences are understood and celebrated. Guidotti is the founder and director of POSITIVE EXPOSURE, an innovative arts, advocacy, and education organization which utilizes the visual arts to celebrate human diversity.

The Genetics Division, part of the Pediatrics Department at NYC Health + Hospitals/Metropolitan, provides comprehensive care for patients with, or at risk of, conditions with a genetic basis. The department offers a range of services, including genetic counseling, diagnosis, and treatment. The clinic provides services to patients of all ages, from prenatal cases to advanced-age adults, with genetic conditions, including chromosomal abnormalities, single gene disorders, Alzheimer’s, and a variety of cancers. For more information, contact 212-423-6452.

Photos from You Are Extraordinary/Ustedes Son Extraordinarios can be viewed online at nychealthandhospitals.org/metropolitan.


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