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Elizabeth Heinze

@elizabethheinze

Registered nurse and rare-disease advocate with 20+ years of patient-centered care, advocacy, and care coordination leadership.

United States
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What I'm looking for

I’m looking to lead patient-centered rare-disease care and advocacy—combining clinical excellence, case management, and education—while collaborating across disciplines to improve access, outcomes, and support systems.

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

NF
Current

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.

HH

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.

HH

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.

NF

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.

NF

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.

SH

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.

SH

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 logoLC

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 logoBC

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

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