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Patient Navigator and Advocacy Training for Gaucher Disease

Examples

A project to train patient navigators and advocates to support individuals with Gaucher Disease, fostering better patient outcomes.

Patient group team members

Jason Harkness Avatar

Jason Harkness

Patient Advocate
Emily Brown Avatar

Emily Brown

Support Specialist

Research group team members

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.

Dr. Patrick Allen Avatar

Dr. Patrick Allen

Specialist in Rare Disease Advocacy

Dr. Patrick Allen is a specialist in rare disease advocacy at the Advocacy Center for Rare Diseases, leading a project to enhance advocacy efforts for Spinal Muscular Atrophy. His work includes developing advocacy strategies, collaborating with researchers, and implementing advocacy campaigns to strengthen support for Spinal Muscular Atrophy patients. Dr. Allen's approach emphasizes the importance of collaboration between patient advocacy groups and researchers to ensure that advocacy efforts are well-informed and impactful. He works closely with patients and their families to understand their needs and advocate for policies and programs that address these needs. Dr. Allen's dedication to advocacy has led to significant advancements in support for Spinal Muscular Atrophy patients, improving their quality of life and fostering a stronger community of advocates.

Dr. Angela Moore Avatar

Dr. Angela Moore

Specialist in Community Support

Dr. Angela Moore is a specialist in community support at the Community Support Network, leading an initiative to develop support networks for patients with Alport Syndrome. Her work includes community needs assessment, support program development, and program implementation to provide essential resources and foster community for Alport Syndrome patients. Dr. Moore's approach is holistic, addressing not only the medical but also the social and emotional needs of patients. She collaborates with patient advocacy groups, healthcare providers, and community organizations to create comprehensive support programs that enhance quality of life. Dr. Moore's dedication to community engagement and support has made her a trusted ally for patients and families affected by Alport Syndrome. Her work underscores the importance of community in managing and living with chronic conditions.