Leadership support for rare disease organizations, advocates, and nonprofit leaders
SUPPORT • STRATEGY • SUSTAINABILITY
Leading a rare disease advocacy organization is deeply meaningful work
—and it can also be demanding, isolating, and emotionally complex.
You do not have to navigate rare leadership alone.
Rare Leader Consulting offers personalized support, strategic guidance, and practical solutions for leaders of rare disease advocacy organizations. Services are flexible, confidential, and tailored to the unique needs of each leader and organization.
Who I am:
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I have spent more than 25 years as a Licensed Marriage and Family Therapist, helping individuals and organizations navigate relationships, conflict, change, grief, stress, and complex decision-making.
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20 years of experience in nonprofit leadership and program development, including eight years as the Executive Director of a national rare disease advocacy organization.
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I understand what it means to care deeply about a mission because it affects your own life, family, or community. I also understand the responsibility of transforming that personal commitment into effective programs, responsible organizational leadership, and meaningful change.
What I offer:
One-on-one leadership coaching and confidential support
Strategic planning for programs, growth, and long-term sustainability
Tools for financial management, event planning, and program development
Guidance for navigating board, staff, volunteer, and community challenges
Support with burnout prevention, boundaries, and decision-making
Insight informed by clinical training, nonprofit leadership, and lived rare disease experience
Flexible consulting packages tailored to your organization’s needs
“I have had the privilege of watching firsthand how deeply Susan understands the rare disease ecosystem...not just from years of leadership as the Executive Director of The XLH Network, but from living the patient journey herself. She brings a rare combination of strategic insight, scientific understanding, regulatory knowledge, and authentic patient perspective. She knows how to bridge patients, researchers, industry, and regulators to accelerate meaningful progress.
Anyone working in the rare disease space would benefit immensely from her expertise, credibility, and unwavering commitment to the communities she serves.”
What Others Say:
“Susan is a very thoughtful and committed leader in the rare disease world. Her combination of skills gives her a unique ability to provide leadership support for patient organizations. Susan is collaborative, creative, and passionate about supporting patient advocacy organizations and the families they serve.”
“I have had the pleasure of knowing Susan for many years and know firsthand the leadership skills, mentorship, and insight she brings to rare disease organizations. She is thoughtful, compassionate, and possesses an unmatched understanding of patient advocacy and non-profit leadership.”