PA) - Medical Specialties | Ehlers-Danlos Center

University of Virginia

1d•Onsite

About The Position

The Advanced Practice Provider (APP) will deliver comprehensive, patient-centered specialty care to adolescents and adults with Ehlers-Danlos syndrome (EDS) and related heritable connective tissue disorders within a newly established Ehlers-Danlos Center at UVA Health. This role focuses on the evaluation, longitudinal management, and coordination of care for patients with complex, multisystem conditions, including chronic pain, autonomic dysfunction, gastrointestinal complications, fatigue, and functional limitations. The APP will play a central role in care coordination across specialties, patient and caregiver education, symptom management, and development of individualized care plans that emphasize function, quality of life, and shared decision-making. The position is based in an outpatient, weekday (Monday–Friday, typical business hours) clinical model and does not require nights, weekends, or holidays. The role is affiliated with the UVA School of Medicine and supported by UVA’s Center for Advanced Practice, which provides dedicated professional development, mentorship, onboarding, and administrative infrastructure tailored to Advanced Practice Providers. This position offers a unique opportunity to help build and shape a comprehensive Ehlers-Danlos Syndrome Center within a leading academic health system. It is ideal for an APP with experience or strong interest in complex chronic disease management, multidisciplinary collaboration, and caring for patients with rare or underserved conditions in a highly specialized, patient-centered setting.

Requirements

Graduate of an accredited graduate school of nursing or physician assistant program with a master’s degree.
Prior clinical experience caring for patients with Ehlers‑Danlos syndrome, heritable connective tissue disorders, or other complex multisystem or rare diseases
Experience in chronic pain management, autonomic disorders (e.g., POTS), hypermobility syndromes, or functional somatic conditions
Strong background in multidisciplinary or specialty clinic settings, with demonstrated care coordination across multiple services
Comfort managing high‑complexity, medically underserved, or diagnostically challenging patient populations
Experience with patient and caregiver education, shared decision‑making, and longitudinal care planning
Excellent communication, organizational, and documentation skills within an EHR‑based academic health system.
License or license eligible as an Advance Practice Provider (Nurse Practitioner, Physician Associate, Certified Registered Nurse Anesthetist, and Certified Nurse Midwife) as set forth by the state of Virginia.
If Nurse Practitioner, license to Practice as a Registered Nurse in the Commonwealth of Virginia is required.
Must demonstrate and maintain all credentialing and licensing requirements of UVA Health System, the Virginia Board of Medicine or the Virginia Board of Nursing, and appropriate certifying bodies.
Current Basic Life Support (BLS) required.
Current PALS/NRP, as required, specific to position.
Advanced Cardiac Life Support (ACLS) as required, specific to position.

Nice To Haves

Interest in program development, quality improvement, or building new clinical services within an academic medical center
Previous involvement in teaching, precepting, or mentoring learners (APP students, residents, fellows)

Responsibilities

Perform comprehensive outpatient evaluations for adolescents and adults with suspected or confirmed Ehlers‑Danlos syndrome and related conditions, including detailed histories, physical examinations, joint hypermobility assessments, functional evaluations, and medication reconciliation.
Diagnose and longitudinally manage chronic and complex conditions commonly associated with EDS, such as chronic pain, joint instability, autonomic dysfunction (e.g., POTS), fatigue, gastrointestinal dysmotility, headache disorders, and functional impairment.
Develop, implement, and adjust individualized care plans in collaboration with patients and families, using shared decision‑making and evidence‑based approaches tailored to rare and multisystem disease.
Prescribe medications, order and interpret diagnostic tests, imaging, and laboratory studies, and monitor treatment response and adverse effects.
Provide preventive care, anticipatory guidance, and symptom‑focused management, with attention to functional optimization, activity modification, injury prevention, and long‑term disease impact.
Coordinate interdisciplinary care with physicians, genetic counselors, physical and occupational therapists, pain management specialists, behavioral health providers, nurses, and other subspecialists as part of the Ehlers‑Danlos Center team.
Educate patients and caregivers on disease mechanisms, symptom management strategies, medication use, pacing/activity strategies, and navigating complex care needs.
Serve as a consistent point of contact for patients with high care coordination needs, helping reduce fragmentation within a large academic health system.
Document all patient encounters accurately, clearly, and in a timely manner in the electronic health record in accordance with UVA Health policies and regulatory standards.
Support clinic operations, including patient panel management, visit scheduling, referral coordination, and follow‑up tracking within the Ehlers‑Danlos Center.
Participate in programmatic data tracking, outcomes monitoring, and quality improvement initiatives related to patient access, care coordination, and clinical outcomes.
Assist with prior authorizations, durable medical equipment requests (e.g., braces, mobility aids), therapy referrals, and communication with external providers as needed.
Adhere to billing, coding, and compliance requirements for specialty outpatient care.
Maintain active Virginia licensure, national certification, and appropriate prescriptive authority as a Nurse Practitioner or Physician Assistant.
Engage in ongoing continuing education related to heritable connective tissue disorders, chronic pain, autonomic conditions, and multidisciplinary care of complex patients.
Participate in UVA’s Center for Advanced Practice, including APP‑specific onboarding, mentorship, professional development, and career advancement opportunities.
Contribute to educational efforts by precepting learners (e.g., APP students, residents, fellows) and sharing expertise in EDS and complex chronic disease management.
Remain current with emerging evidence, consensus guidelines, and best practices related to Ehlers‑Danlos syndrome and related disorders.
Serve as a key clinical leader within the Ehlers‑Danlos Center, advocating for patient‑centered, compassionate, and coordinated care in complex cases.
Contribute to the development, refinement, and expansion of the newly established Ehlers‑Danlos Center, including clinical workflows, care models, and patient education resources.
Mentor and support other team members and participate in onboarding and knowledge‑sharing as the program grows.
Lead or participate in quality improvement, clinical innovation, or research‑adjacent initiatives aimed at improving access, outcomes, and patient experience for individuals with EDS.
Represent the UVA Health Ehlers‑Danlos Center in institutional committees, educational activities, or outreach efforts when appropriate.