Hope For Harlow: How a Jacksonville family is raising money for research of rare disease
When Harlow was 9-months-old, she was diagnosed with a disease so rare there has been little research. Her family is hoping to change that.
The UF Health Genetics and Genomics program provides inpatient consultation services at UF Health Jacksonville and comprehensive outpatient care through the UF Health Pediatric Multispecialty Center – Prudential Drive.
Our team evaluates and manages children and adults with known or suspected genetic conditions and works closely with primary care providers, pediatric subspecialists and community partners to coordinate comprehensive care.
Patients may be referred for evaluation of:
The clinical team has specialized expertise in the evaluation and management of:
Our team of professionals provide the following services:
The Neurofibromatosis Program at UF Health Jacksonville provides comprehensive care for both children and adults with neurofibromatosis. We provide exceptional medical care while supporting patients and their families through the emotional and social aspects of their diagnosis. As a member of the Children’s Tumor Foundation NF Clinic Network, our team is committed to providing expert care focusing on diagnosis, education, management, and counseling.
Neurofibromatosis is a genetic disorder of the nervous system that causes tumors to grow on nerve tissue. The clinic specializes in managing three types of neurofibromatosis.
Our clinical team includes a clinical geneticist, certified nurse practitioners, and genetic counselors. We offer care coordination with multiple specialists and assist pediatric patients transitioning to adult health care, ensuring they have a multidisciplinary care team throughout their lives.
Advancing care for children and adults with genetic and genomic conditions requires collaboration among healthcare providers, researchers, community partners, advocates, and families. Your support helps us expand access to specialized services, advance research, educate future healthcare professionals, and improve the lives of children and families affected by genetic conditions.
The division of genetics and genomics is dedicated to providing comprehensive, family-centered care while advancing education, research, and innovation in genomic medicine.
Contributions may help support:
We welcome opportunities to collaborate with:
Together, we can improve access to genetic services, advance scientific discovery, and support children and families navigating genetic and genomic conditions.
Whether you are seeking an appointment, have questions about genetic testing, need assistance with a referral, or would like additional information about our services, our team is here to support you. We are committed to providing compassionate guidance and helping patients, families, and healthcare providers navigate the complexities of genetic and genomic care.
We welcome inquiries from families, referring providers, community partners, and organizations interested in learning more about the division of genetics and genomics. Please contact us at, (904) 633-0920 and a member of our team will be happy to assist you.
When Harlow was 9-months-old, she was diagnosed with a disease so rare there has been little research. Her family is hoping to change that.