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.
Contact:Noel Alicea, NYC Health + Hospitals/Metropolitan, 212-423-8162
About NYC Health + Hospitals/Metropolitan
NYC Health + Hospitals/Metropolitan is the community hospital of choice for residents of East Harlem, northern Manhattan, and neighboring communities. NYC Health + Hospitals/Metropolitan provides culturally sensitive primary and specialized medical care to patients of all ages regardless of national origin, immigration status, or ability to pay. Since its founding in 1875, the hospital has been affiliated with New York Medical College, representing the oldest partnership between a hospital and a private medical school in the United States. NYC Health + Hospitals/Metropolitan is a part of the NYC Health + Hospitals public health care system. For more information, please visit www.nychealthandhospitals.org/metropolitan.
About NYC Health + Hospitals
NYC Health + Hospitals is the largest public health care system in the nation, serving more than a million New Yorkers annually in more than 70 patient care locations across the city’s five boroughs. A robust network of outpatient, neighborhood-based primary and specialty care centers anchors care coordination with the system’s trauma centers, nursing homes, post-acute care centers, home care agency, and MetroPlus health plan—all supported by 11 essential hospitals. Its diverse workforce of more than 42,000 employees is uniquely focused on empowering New Yorkers, without exception, to live the healthiest life possible. For more information, visit www.nychealthandhospitals.org and stay connected on Facebook at https://www.facebook.com/NYCHealthSystem or Twitter at @NYCHealthSystem.