Elizabeth Heinze
@elizabethheinze
Registered nurse and rare-disease advocate with 20+ years of patient-centered care, advocacy, and care coordination leadership.
What I'm looking for
I’m a Registered Nurse and rare disease advocate with 20+ years of lived experience supporting individuals with ultra-rare genetic conditions, paired with clinical expertise in ICU and case management. I focus on translating complex medical information into clear, meaningful education for patients and caregivers, and I thrive at the intersection of clinical care and advocacy.
I bring proven leadership from 7+ years of nonprofit board service, including Board Chair and Acting Executive Director for a national rare disease foundation. I’ve guided organizational operations during executive transitions, collaborated with patient families, researchers, clinicians, and industry partners, and contributed to program development focused on patient support, education, and advocacy.
Experience
Work history, roles, and key accomplishments
RN Case Manager
HSHS St Nicholas Hospital
Oct 2025 - Present (10 months)
Managed a complex caseload by coordinating care across acute, post-acute, and community settings to support discharge readiness. Served as a liaison between patients, families, and healthcare teams and provided patient education related to disease processes and care transitions.
Board Chair
National Niemann-Pick Disease Foundation
Jul 2024 - Present (2 years 1 month)
Provided strategic leadership for a national rare disease organization serving patients, caregivers, and clinicians. Directed organizational operations during the Executive Director transition to ensure continuity of programs, partnerships, and stakeholder engagement.
ICU Registered Nurse
HSHS St Nicholas Hospital
Mar 2025 - Oct 2025 (7 months)
Provided high-acuity ICU care for critically ill patients in a fast-paced environment. Monitored complex clinical indicators and collaborated with multidisciplinary teams to manage life-threatening conditions and interventions.
ICU Extern
HSHS St Nicholas Hospital
May 2024 - Mar 2025 (10 months)
Supported delivery of high-acuity ICU care for critically ill patients. Assisted with monitoring of complex clinical indicators and multidisciplinary coordination for life-threatening conditions and interventions.
Secretary
National Niemann-Pick Disease Foundation
Jul 2023 - Jul 2024 (1 year)
Served as Secretary for a national rare disease organization supporting patients, caregivers, and clinicians. Supported governance and organizational continuity during leadership transitions.
Member-at-Large
National Niemann-Pick Disease Foundation
Mar 2019 - Jul 2023 (4 years 4 months)
Served as a Member-at-Large for a national rare disease foundation focused on patient support, education, and advocacy. Contributed to organizational efforts to advance awareness and support initiatives.
Patient Care Tech
Sparrow Hospital
Oct 2011 - Jun 2020 (8 years 8 months)
Provided patient care and supported clinical operations in a hospital setting. Assisted with shift transitions and workflows and supported procedural tasks according to hospital guidelines with accurate documentation.
Certified Nurse Assistant
Sparrow Hospital
Oct 2010 - Oct 2011 (1 year)
Served as a Certified Nurse Assistant, supporting patient care and assisting with procedural needs per hospital guidelines. Acted as a preceptor for new hires and participated in hiring committee activities.
Education
Degrees, certifications, and relevant coursework
Lakeshore Technical College
Associate's degree in Nursing, Nursing
2021 - 2024
Earned an Associate’s degree in nursing at Lakeshore Technical College from 2021 to 2024.
Baker College
Associate's degree of Business Administration, Business Administration
1999 - 2002
Earned an Associate’s degree in Business Administration at Baker College from 1999 to 2002.
Tech stack
Software and tools used professionally
Availability
Location
Authorized to work in
Salary expectations
Job categories
Skills
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