Voices for the Rare is a nonprofit organization dedicated to uplifting individuals and families affected by rare and complex medical conditions through full-spectrum support—awareness, education, advocacy, resource navigation, and collaborative community engagement.
Our Leadership
Voices For The Rare is led by individuals with lived experience, professional expertise, and a shared commitment to improving the lives of people affected by rare diseases. Our directors bring compassion, accountability, and advocacy to every aspect of our work.
Voices For The Rare is a grassroots, founder-led organization supported by volunteer board members, including family members, who serve without compensation and in accordance with the organization’s conflict of interest and governance policies.
Together, our leadership is dedicated to advancing health equity, amplifying patient voices, and ensuring that no individual—diagnosed or undiagnosed—faces their journey alone.
Holly Martinez, Founder & Executive Director
Voices For The Rare
Holly Martinez is the Founder and Executive Director of Voices For The Rare, bringing lived experience as a patient navigating an ultra-rare disease alongside the challenges of a complex healthcare system, housing instability, financial hardship, benefit eligibility, and life as a disabled student. Her personal journey has shaped a deep and enduring commitment to advocacy, equitable access to care, stable housing, preventative support, and patient-centered policy change.
Holly founded Voices For The Rare not only to address systemic gaps in healthcare and social support, but to ensure that no individual ever has to face a disease diagnosed or undiagnosed alone. At the heart of the organization is the belief that every person deserves to be seen, supported, and heard, regardless of how rare or misunderstood their condition may be.
Under her leadership, Voices For The Rare advances health equity through community education, systems navigation, and the amplification of patient voices that are too often excluded from decision-making spaces. Holly is deeply committed to building inclusive systems rooted in dignity, accessibility, and hope for individuals and families affected by rare and complex conditions.
Holly is available for speaking engagements at schools, medical institutions, community forums, and inspirational events. Voices For The Rare welcomes opportunities to collaborate, educate, and advocate alongside partners committed to meaningful change.
Holly Martinez also maintains a personal advocacy blog where she shares lived experience, policy work, and educational content related to rare disease and disability. This blog is shared for awareness and educational purposes, and reflects her personal experiences and perspectives.
https://www.hollysrarediseasejourney.com
Views expressed are personal and do not necessarily represent official positions of Voices For The Rare.
Deonté Martinez, Director
Voices For The Rare
Deonté serves as a Director of Voices For The Rare, supporting the organization’s mission to advance awareness, access, and advocacy for individuals and families affected by rare disease.
Through hands-on experience as a caregiver for his mother, Holly, Deonté has assisted in navigating complex healthcare systems, working with case managers, and supporting her transition into life with a disability. This lived experience brings meaningful perspective to organizational governance, strategic planning, and patient-centered decision-making.
Deonté is deeply committed to collaboration, transparency, and patient empowerment. Having witnessed individuals being dismissed or mistreated due to medical conditions beyond their control, he believes the rare disease community deserves a fresh, compassionate approach one that ensures people are not only heard, but supported in a safe and inclusive environment where they can grow, heal, and thrive.
Tony Martinez, Director
Voices For The Rare
Tony Martinez serves as a Director of Voices For The Rare, providing oversight and stewardship to ensure responsible, ethical management of organizational resources in alignment with the organization’s mission and values.
With more than 30 years of experience in management and leadership, Tony brings a strong commitment to accountability, transparency, and long-term sustainability. His background supports sound governance practices and helps ensure donor trust through responsible stewardship of funds.
As a retired professional and lifelong sports fan, Tony values teamwork, resilience, and perseverance—principles that guide his service to the organization. He is deeply committed to giving back to the community, particularly through advocacy and support for individuals experiencing homelessness, and believes strongly in dignity, compassion, and access to basic needs.
Tony has walked alongside the organization’s Founder throughout her medical journey, including periods of misdiagnosis and ongoing advocacy related to rare disease, oral cancer awareness, and access to speech therapy and supportive care. This lived experience strengthens his dedication to ensuring that no individual or family feels isolated while navigating complex and often overwhelming health challenges.
Tony is proud to support Voices For The Rare as a grassroots, community-rooted organization built on family, trust, and the belief that meaningful change begins with showing up for one another.