Deanna Fournier

Deanna Fournier is a rare disease survivor and the executive director of the Histiocytosis Association, a global nonprofit organization for histiocytic disorders. A former director of business development and global learning and development, Fournier volunteered her time acting as an advocate and volunteer for the histiocytosis and rare disease community prior to serving as executive director. Fournier is a patient advocate for the NCCN Guidelines for Histiocytic Neoplasms, co-chair of the PCORI Advisory Panel on Rare Disease, chair of the Patient Advisory Subcommittee for the INTO-HLH Registry and has been actively leading an international collaborative effort to harmonize research priorities with stakeholders across the advocacy and medical-scientific community. 

Fournier's passion for involving patient voices in study design and research priorities is demonstrated through the Histio Ambassador Program, which trains eager community members and provides opportunities for participation in research. Additionally, Fournier has driven partnerships between the Histiocytosis Association and principal investigators to collaborate on recruitment and engagement in research opportunities. Fournier is eager to expand her knowledge, impact more areas of rare disease and rare cancer research and to support others who are doing incredible work for patients and families. 

Involvement with PCORI

Advisory Panel on Rare Disease Member

Ambassador Interests

Health Conditions Health Conditions These are the broad terms we use to categorize our funded research studies; specific diseases or conditions are included within the appropriate larger category. Note: not all of our funded projects focus on a single disease or condition; some touch on multiple diseases or conditions, research methods, or broader health system interventions. Such projects won’t be listed by a primary disease/condition and so won’t appear if you use this filter tool to find them. View Glossary
Populations Populations PCORI is interested in research that seeks to better understand how different clinical and health system options work for different people. These populations are frequently studied in our portfolio or identified as being of interest by our stakeholders. View Glossary
Stakeholder Types
State State The state where the project originates, or where the primary institution or organization is located. View Glossary

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