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Gene Therapy for Rett Syndrome

Examples

This project aims to develop gene therapy treatments for Rett Syndrome through a collaborative effort between patient advocacy groups and researchers.

Patient group team members

Jane Smith Avatar

Jane Smith

Patient Advocate
Emily Brown Avatar

Emily Brown

Support Coordinator

Research group team members

Dr. Jennifer Smith Avatar

Dr. Jennifer Smith

Expert in Patient-Centered Research

Dr. Jennifer Smith is an expert in patient-centered research at the Rare Disease Research Center, focusing on Duchenne Muscular Dystrophy. She leads projects to enhance patient participation in research, develop participation guidelines, recruit patient participants, and conduct patient-centered research activities. Dr. Smith's work emphasizes the importance of including patients' perspectives in research, ensuring that studies are relevant and beneficial to those affected by Duchenne Muscular Dystrophy. Her collaborative approach involves working closely with patient advocacy groups and families to identify research priorities and design studies that address their needs. Dr. Smith's dedication to patient engagement has transformed the research landscape for Duchenne Muscular Dystrophy, fostering a more inclusive and impactful approach to scientific inquiry.

Dr. Charles Carter Avatar

Dr. Charles Carter

Specialist in Holistic Care

Dr. Charles Carter is a specialist in holistic care at the Holistic Health Institute, leading a project to develop holistic support programs for Neurofibromatosis patients. His work involves identifying patient needs, developing support programs, and implementing and evaluating these programs to address both medical and psychosocial needs. Dr. Carter's holistic approach integrates various aspects of care, including medical treatment, psychological support, and lifestyle management. He collaborates with multidisciplinary teams to ensure that patients receive comprehensive and coordinated care. Dr. Carter's dedication to holistic care has transformed the support landscape for Neurofibromatosis patients, providing them with the resources and support they need to manage their condition effectively. His work highlights the importance of addressing the whole person in healthcare, recognizing that physical health is closely linked to emotional and social well-being.