Professional Overview

Institutional expertise. Independent insight.

Michele Levoir Sloan is a rare disease advocate, nonprofit founder, and strategic consultant with a unique ability to bridge patient experience with institutional systems. Her work integrates lived experience, active program development, and formal training in patient advocacy, healthcare navigation, and policy frameworks.

Leadership & Experience

Michele’s personal journey into rare disease advocacy began with her daughter’s diagnosis of H-ABC leukodystrophy in 2014. Navigating a fragmented and often inaccessible system led her to develop deep expertise in clinical care pathways, research engagement, and long-term support planning for families.

Having spent over 25 years in finance, she recently retired and decided to focus on the non profit she co-founded. This national rare disease organization supports patients and caregivers, builds education programs, collaborates with clinicians and researchers, and advances awareness and policy efforts.

Michele’s philosophy is grounded in a simple principle:

Programs should be built around real patient needs—not theoretical models.

She combines lived experience, formal advocacy training, and strategic expertise to:

  • Translate complexity into actionable solutions

  • Bridge communication gaps between stakeholders

  • Design programs that are both compassionate and scalable

Patient Advocacy Services

Michele is actively advancing her expertise through formal patient advocacy training aligned with national certification standards.

Her focus includes:

  • Medicare and Medicaid systems and access pathways

  • Appeals processes and patient rights

  • Ethical frameworks in patient advocacy

  • Health equity and access to care

  • Navigation of complex care systems

  • Transitioning care from pediatric to adulthood

This work strengthens her ability to provide guidance that is both compassionate and grounded in real-world healthcare systems.

Organization Services

ESC supports organizations, families, and stakeholders across the healthcare and rare disease ecosystem by:

  • Designing and implementing patient support and navigation programs

  • Supporting grant development, donor engagement, and fundraising strategy

  • Developing education initiatives grounded in real-world patient needs

  • Translating complex healthcare systems and insurance pathways into actionable guidance

  • Advising on program structure, scalability, and sustainability

ECS is actively engaged in national-level initiatives focused on patient support, caregiver education, and nonprofit program development.

Advocacy & Community Stewardship

Beyond her professional work, Michele is deeply committed to advocacy, inclusion, and community engagement, with a strong focus on supporting mission-driven initiatives serving vulnerable populations.

She is the Co-Founder and Treasurer of the Foundation to Fight H-ABC, where she has served since 2015, supporting research and awareness for a rare childhood neurological condition. Under her leadership, the organization has helped elevate national awareness of this ultra-rare disease and expand access to information and support for affected families.

From 2020 to 2025, Michele served as Community Relations Chairperson for ADAPT, a business resource group supporting people with disabilities under Prudential’s Inclusive Solutions framework. In this role, she advanced disability advocacy initiatives, supported fundraising efforts, and promoted inclusive community engagement, including participation in Special Olympics events.

Michele is also a member of the Maryland Beneficiary Advisory Council, where she provides input and guidance to the Maryland Department of Health on Medicaid policy and beneficiary experience.

In addition, she serves as an Ambassador for the United Leukodystrophy Foundation, supporting patients and families living with leukodystrophies across the United States by helping connect them with resources, information, and community support.

Michele volunteers on the EveryLife Foundation Taskforce for transitioning from pediatric care to adulthood.

Speaking Engagements

In her rare disease advocacy role, speaking out on the challenges facing rare disease patients and families is an important aspect of advocacy. Michele accepts speaking engagements, either in person, or via webinar. Areas of focus included topics oriented around legislative advocacy, rare disease advocacy, patient advocacy and the rare disease eco-system.

Education

Michele holds a Bachelor’s Degree from William Paterson University of New Jersey.