kevin rohrbach

Kevin Rohrbach is a passionate representative of the rare disease community. His experiences encompass a broad range of the rare landscape that spans the product lifecycle, to the journey patients and their families unwillingly embark upon during the onset of a rare disorder.


Kevin began his career in rare disease with a small startup company, known as Centric Health Resources. Centric was founded on the basis of improving the lives touched by rare disease through offering support and educational services. During his tenure, Kevin’s responsibilities included the design and development of customized patient care programs. These programs shared one primary objective; to improve the quality of life for those affected by rare disease. To effectively accomplish this charge, the strategy was rather simple. First and foremost, Kevin and the team developed a firm appreciation for the “day in the life of” a patient and their family. In mapping both the patient’s emotional and physical journeys, they were able to architect programs that went beyond simply offering a therapeutic benefit but addressed the holistic needs of the patients they served. Upon concluding his tenure as Vice President of Rare Disease, Kevin either lead or was involved with the development of many programs spanning multiple therapeutic categories. These programs contemplated both the clinical and commercial stages of the product lifecycle and patient journey.


In 2015, Kevin’s involvement with rare disease made an unforeseeable turn with the diagnosis of two immediate family members. Upon this occurrence, rare disease took on an entirely new meaning for him and his family. They were now living the stories and struggles Kevin heard all too often during his time at Centric. Shortly after learning that he would embark upon his own rare journey, Kevin felt the need to make patient advocacy the focal point of his career. He began working for the highly recognized patient advocacy organization, Global Genes, that exists to eliminate the barriers and challenges born by rare disease.


Through advocating, educating, and facilitating transparent engagements among all stakeholders, Kevin’s personal and professional passions now align. His unique experiences offer an extraordinary perspective of the rare ecosystem and the responsibilities of all that play a role in rare disease.

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The Rare Advocacy Movement (RAM) is a patient advocacy initiative focused on documenting the evolving complex ecosystem and unique dynamics of the rare disease patient advocacy landscape. RAM serves as community-based professional network and Center of Insight (COI) for rare disease focused stakeholders. The RAM membership is comprised of a network of patient advocacy community expert professionals that have vowed to abide by the established Code of Conduct for Membership.