The Orlando Health Rare Disease Program consists of experts from a multitude of specialties throughout the Orlando Health organization, working together to help diagnosis and treat rare diseases for our pediatric and adult patients. In addition, our team works collaboratively on research and innovation to help continue to find safe and effective treatment for rare diseases.
The Orlando Health Arnold Palmer Hospital for Children Division of Genetics treats children and adults with rare genetic conditions including metabolic disorders. Established in 1992, it is the most comprehensive pediatric medical genetics center in Central Florida. Our multidisciplinary team includes board-certified pediatric geneticists, an advanced registered nurse practitioner, board-certified genetic counselors, a registered dietitian, a certified pediatric nurse and other staff members dedicated to providing personalize and compassionate care to patients and their families.
Treating genetic conditions related to:
Contact: (407) 648-7802
The Bleeding and Clotting Disorders Program, part of the Haley Center for Children’s Cancer and Blood Disorders at Orlando Health Arnold Palmer Hospital for Children, strives to provide comprehensive expert medical care to children with bleeding and clotting disorders. Through education and advocacy, we have created a program that empowers the bleeding and clotting patients to advocate for themselves and their community. Currently the program team has two comprehensive clinics per month. One clinic is dedicated to those with hemophilia or severe bleeding disorders with participation from physical therapy, social work, and hematology provider. The second clinic is the young women with bleeding disorder clinic, with participation from adolescent gynecology and hematology team.
Contact: (321) 841-7744
Patients with suspected, uncommon, severe, or persistent infections are evaluated and treated at the Orlando Health Arnold Palmer Hospital for Children Infectious Diseases and Immunology practice. Many infections caused by bacteria, viruses, fungi or parasites can be challenging for a general pediatrician to treat because of the infection’s severity, location or its unusual presentation. A pediatric infectious diseases specialist is a licensed pediatrician with expertise in the evaluation and management of these infections in newborns, children and adolescents. Many patients with undiagnosed immunodeficiencies can have unusual presentations delaying diagnosis for years and our healthcare team works with our patients to diagnosis and treat complex infections.
Contact: (321) 841-7360
The Orlando Health Comprehensive ALS Center, part of the Orlando Health Neuroscience Institute, is the only comprehensive center of its kind in Central Florida dedicated to the treatment of amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease. It is a multidisciplinary center consisting of physical therapy, occupational therapy, speech therapy, physicians, nurses, registered dietitians, respiratory therapy and social workers. The multidisciplinary team works together with patients to acknowledge all for their needs in one visit.
Contact: (321) 842-9805
The Orlando Health Muscular Dystrophy Clinic, part of the Orlando Health Neuroscience Institute, is a multidisciplinary and supportive clinic consisting of physical therapy, occupational therapy, speech therapy, physicians, nurses, registered dietitians, respiratory therapy and social workers. Patients with every hereditary disorder partner with their healthcare team throughout their treatment and for their support needs. The team also works with the patient to ensure connectivity to additional healthcare specialists as needed including cardiology, pulmonology and orthopedics.
Contact: (321) 842-9805
Orlando Health Medical Group Infectious Disease provides comprehensive services for the diagnosis and treatment of conditions caused by microbes (bacteria, fungi, viruses and protozoans) and larger agents of disease. Our physicians are recognized experts, specializing in providing diagnoses and treatment of complex conditions such as hepatitis, pneumonia, meningitis and AIDS. Services are provided on both an inpatient and outpatient basis, through collaborative physician consultation, allowing our patients to receive the highest quality of care.
Contact: (407) 423-1039
The Orlando Health Advanced Rehabilitation Institute Outpatient Center works with individuals with rare neurological diagnoses in a multidisciplinary team setting, including physical therapy, occupational therapy, and speech therapy. We have an assistive technology clinic which includes complex wheelchair seating and positioning and augmentative and alternative communication device specialty evaluations. Our team also provides therapy focusing on wheelchair seating and positioning as it relates to the pediatric transition into adulthood.
Contact: (321) 841-3220
The Orlando Health Scripts Specialty Pharmacy strives to improve outcomes for patients with chronic, often complex, or rare conditions. Our pharmacy services aim to reduce barriers to staying on therapy, and include personalized patient education, side effect management, adherence monitoring, and assistance in obtaining copay assistance and locating patient support resources.
Contact: (321) 842-1622
The Orlando Health Center for Innovation foundry project is focused on pediatric to adult care transitioning (also known as PACT). PACT has focused on helping our pediatric patients, and their families and caretakers. with certain conditions navigate and transition smoothly into adulthood by providing content and booklets that have been created by subject matter experts. We have completed booklets that focus on general adult skills, spina bifida, sickle cell, hemophilia and currently working on Von Willebrand’s disease. Each booklet has content on their condition in detail, causes of and types, how to manage it, symptoms, medications, nutrition, physical activities they can do, urology, mental health, monitoring, treatment centers, how to make safe choices, insurance and more. The booklets go into great details of how the patient can start taking ownership of their health and feel comfortable doing so.
Conditions of focus:
Contact: (321) 843-7016
The Orlando Health Cancer Institute (OHIC) providers multidisciplinary cancer care throughout the Central Florida region. They offer both inpatient and outpatient services including diagnosis, surgical oncology, medical oncology/chemotherapy, radiation oncology/therapy, genetics and high-risk clinic, lung cancer screening clinic, survivorship clinics, oncology-specific nutrition, rehabilitation, social work and palliative and hospice services. OHIC also offer patient navigation and integrative medicine through the Cancer Support Community.
Contact: (321) 841-1869
Orlando Health Arnold Palmer Hospital for Children Center for Digestive Health and Nutrition Provides care for both pediatric and young adult patients with appropriate diagnosis and therapeutic care for various types of common and rare disorders. Orlando Health Arnold Palmer Hospital Specialty Diagnosis and Translational Research Laboratory conducts research on various kinds of diseases with the application of multidisciplinary scientific experiments using conventional basic science and advanced multiomic approaches including molecular genetics, transcriptomics, proteomics, microbiomics and metabolomics.
We also offer the Orlando Health Arnold Palmer Hospital for Children Feeding Difficulties Center, which supports children and their families through challenges such as food allergies, chewing or swallowing problems, digestion issues or picky children.
Contact: (321) 841-3338
The Orlando Health Arnold Palmer Hospital for Children Tuberous Sclerosis Clinic provides a multidisciplinary clinic for patients with tuberous sclerosis. The specialties involved are- neurology, genetics, neuro-oncology, nephrology, cardiology, gastroenterology, dermatology and neurosurgery. The clinic accepts pediatric patients and provides care into adulthood and beyond.
Contact: (321) 842-6671
The Orlando Health Arnold Palmer Hospital for Children Cystic Fibrosis Center provides a multidisciplinary clinic for patients with cystic fibrosis. We include pediatric pulmonology, pediatric gastroenterology, genetics, pediatric clinical psychology and pediatric endocrinology. Our core team is made up of five pulmonologists, two pediatric nurse practitioners, a dedicated cystic fibrosis nurse, dietician, social worker and a patient navigator (medical assistant).
Contact: (321) 841-6350
The Orlando Health Arnold Palmer Hospital for Children treats patients ages zero to 21. It is multidisciplinary program with several pediatric specialties including gastroenterology, urology, neurosurgery, orthopedics, rehabilitation, physical medicine and rehabilitation, social work, pulmonary and sleep medicine and fetal care. Patients are seen by all specialties individually during the same visit. Providers then meet immediately after the clinic to discuss each patient as a group.
Contact: (321) 841-5683
The Orlando Health Heart and Vascular Institute provides a multidisciplinary approach to diagnosis and management of patients with amyloidosis. They work closely with specialists from various Orlando Health institutes to include hematology and oncology, cardiology, orthopedics, nuclear medicine, genetics and neurology. Orlando Health currently has a grant for an amyloid nurse navigator, who assists with scheduling and testing to get a timelier diagnosis and treatment for patients.
The Orlando Health Heart and Vascular Institute has several programs and clinics dedicated to rare diseases including an amyloidosis clinic, heart failure program, congenital heart failure program and electrophysiology and arrythmia center.Contact: (321) 841-6444
The Orlando Health Multiple Sclerosis Comprehensive Care Center providers the highest level of care for multiple sclerosis patients and is a designated Comprehensive Care Center. The center uses a multidisciplinary approach for patients including physicians, nurses, physical therapy, occupational therapy, speech and language therapy and social work.
Contact: (321) 841-2800
Orlando Health Arnold Palmer Hospital for Children Craniomaxillofacial Surgery specialty practice has a subspecialized team, providing state-of-the-art care for infants, children and adolescents with a variety of congenital and acquired facial conditions.
We offer prenatal counseling to support families throughout their journey. The multidisciplinary cleft and craniofacial disorders team provides treatment that is comprehensive, compassionate and highly personalized.
Contact: (407) 839-8407
The Orlando Health Arnold Palmer Hospital for Children Metabolic Bone Program offers comprehensive care for bone conditions in children. By partnering with the pediatric endocrinology center, children receive the proper nutrients and care to overcome his or her condition.
Contact: (321) 841-3303
The Orlando Health Arnold Palmer Hospital for Children Diabetes Program assists children with type 1 or type 2 diabetes. The team of physicians, diabetes educators and dietitians will work with children and their families to develop a long-term care plan.
Contact: (321) 841-3303
The Howard Phillip Center for Children and Families serves the most at-risk families in Central Florida. We help thousands of toddlers with special needs, children who have been abused and teens who lack access to healthcare with our comprehensive services.
Services include a child protection team, a developmental center, a child’s advocacy center, and a school-based mobile healthcare unit called Teen Xpress.
Contact: (407) 317-7430
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