IN HER WORDS
“My goal is to bring the precision of genomic science out of the laboratory and into your life… to be the direct, dedicated partner you need to thrive, not just survive, with a rare condition.”
Dr. Jessica Duis
MEET YOUR PHYSICIAN
Dr. Jessica Duis, MD, MS
Bridging breakthrough science and human connection.
Board-certified: Medical Genetics & Genomics
Board-certified: Pediatrics
Johns Hopkins School of Medicine
Children & adults
Delivering on the promise of highly personalized, direct-access care requires more than good intentions. It requires a physician who has been at the absolute forefront of rare disease science.
Dr. Duis is a board-certified neurogeneticist and pediatrician. She built this practice to solve a critical gap in rare disease care: the disconnect between world-class genomic research and the daily, lived experience of patients and their families.
As a true “translational architect,” Dr. Duis doesn’t just read the latest medical literature; she has spent her career helping write it.
A world-class clinical expertise
Top-tier training: Medical training at the Johns Hopkins University School of Medicine.
Pioneering patient care: Founded and directed multidisciplinary Centers of Excellence for rare diseases at Vanderbilt University Medical Center and the University of Colorado/Children’s Hospital Colorado, serving individuals with Angelman syndrome, Prader-Willi syndrome, Dup15q syndrome, DEEs, and more.
Leading the future of medicine: A clinical leader and clinical development executive who has designed and run trials for breakthrough therapies, working with the FDA and EMA to accelerate pathways for orphan drugs.
Areas of Focus
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We provide a longitudinal medical home for both children and adults. Our approach moves beyond managing isolated symptoms to addressing the interconnected, multisystem nature of rare disease. By managing the "whole person," we ensure continuity of care as patients transition through every stage of life—from early childhood development to adult community support and care.
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Utilizing deep genomic expertise to provide diagnostic clarity, Dr. Duis leverages her background in translational science and clinical development to interpret complex genetic data, offering answers to those on a "diagnostic odyssey" and providing a clear roadmap for those with known conditions.
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We have eliminated the traditional barriers of the healthcare system. By removing gatekeepers and call centers, we ensure patients have a direct line to their physician. This model allows for timely intervention during flares, immediate answers to complex questions, and a level of security that "rare" families seldom experience.
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We empower families to become experts in their own care. This includes dedicated school advocacy—navigating IEP and 504 processes to ensure educational environments support the child’s unique needs—as well as providing the latest evidence-based education on rare disease progression and emerging therapies.
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For patients with lifelong conditions, the move from pediatric to adult medicine is often a point of crisis. We specialize in transition planning, ensuring that the specialized care, therapy, and support systems built in childhood are successfully translated and maintained in the adult medical world. We remain a consistent care partner throughout life even when other providers are changing.
Certifications
Being Board Certified in both the American Board of Medical Genetics and Genomics, American Board of Pediatrics, Dr. Duis provides both comprehensive pediatric and adult care as well as advanced diagnostic and management expertise in rare and inherited disorders.
SERVICES
How we can help
From a first genetic evaluation to lifelong management, with one physician who knows your whole story.
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Diagnostic clarity for rare and complex conditions. If you or your child has unexplained symptoms, developmental delay or regression, muscle weakness, neuropsychiatric or behavioral concerns, metabolic disease, hypermobility, or a suspected genetic condition, a comprehensive genetic evaluation can provide answers.
As a board-certified neurogeneticist, Dr. Duis specializes in rare neurogenetic disorders, inborn errors of metabolism, neuromuscular disease, neurodegeneration, connective tissue conditions and complex multisystem illness that is often missed or misunderstood.
An evaluation may include a detailed personal and family history, a physical exam for syndromic features, review of prior records, and targeted genetic testing.
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A lifelong partnership. Rare diseases are rarely simple, and rarely short-term. Dr. Duis provides longitudinal care for Angelman, Prader-Willi, Pitt-Hopkins and Kabuki syndromes, undiagnosed genetic disorders, DEEs, metabolic, connective tissue and neuromuscular conditions, and more.
Coordination with subspecialists
Monitoring for complications
Medication review & optimization
Family counseling
Transition planning into adulthood
Preventive screening
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Evaluation and management of developmental delay, intellectual disability, autism, ADHD in medically complex patients, and genetic syndromes affecting development, with school advocacy, IEP support and coordination with therapy providers. Medical and developmental needs are addressed together, not separately.
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Review of outside records, specialist collaboration, medication reconciliation and communication with primary care, plus pediatric-to-adult transition support: adult referrals, self-management education, and legal and guardianship considerations.
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For appropriate patients, virtual visits for genetic counseling follow-up, rare disease management, review of prior records and ongoing care coordination. Telemedicine expands access while keeping care thoughtful and personal.
Expert diagnosis and long-term management
Deep knowledge of complex and rare disorders, plus innovative whole-person thinking, to create individualized plans for living.
Multisystemic disease
Chromosomal disorders
Complex care coordination
Undiagnosed disorders
Rare genetic diseases
Neurogenetic & neurodevelopmental
Complex neurogenetic disorders
Developmental epileptic encephalopathies (DEE)
Neuromuscular disorders
Neurodegenerative conditions
Developmental & behavioral care (incl. autism, ADHD)
Genetic obesity & neuroendocrine
MC4R pathway disorders
Syndromic obesity
Neuroendocrine dysfunction
Inborn errors of metabolism
Metabolic management
Complex metabolic care
Lysosomal & peroxisomal disorders
Connective tissue & fibrinopathies
Fibrinopathies & TGF-beta vasculopathies
Ehlers-Danlos syndromes (EDS)
Hypermobility & comorbidities
Don’t see your condition? Rare is our specialty. Reach out and we’ll talk through whether we’re the right fit.