Dr. Robert Garcia

Specialist in Patient Advocacy

Dr. Robert Garcia is a specialist in patient advocacy at the Patient Advocacy Institute, leading a project to train patient navigators and advocates for Gaucher Disease. His work includes developing training curricula, conducting training sessions, and evaluating training outcomes to support individuals with Gaucher Disease. Dr. Garcia's approach emphasizes the importance of empowering patients and their families through education and advocacy. He collaborates with healthcare providers and patient organizations to create comprehensive training programs that address the unique needs of Gaucher Disease patients. Dr. Garcia's dedication to patient advocacy has led to the development of innovative support structures that enhance patient care and improve outcomes. His work is a testament to the power of advocacy in transforming the lives of patients with rare genetic disorders.

Dr. Laura Martinez

Principal Investigator

Dr. Laura Martinez, a principal investigator at MD Anderson Cancer Center, focuses on Fabry Disease. Her leadership in clinical research has been instrumental in developing new treatment options. Fabry Disease, a rare genetic disorder caused by the buildup of a particular type of fat in the body's cells, leads to a range of severe symptoms, including pain, kidney failure, and cardiovascular issues. Dr. Martinez's work involves detailed clinical studies and trials that aim to improve the quality of life for Fabry patients. She employs a patient-centric approach, ensuring that treatments are not only effective but also tailored to the needs of individual patients. Dr. Martinez's research has explored various therapeutic avenues, including enzyme replacement therapy and gene therapy, pushing the boundaries of what is possible in Fabry Disease treatment. Her collaborations with pharmaceutical companies and patient advocacy groups have facilitated the translation of her research into clinical practice, bringing new hope to patients who previously had limited options. Dr. Martinez is also committed to education and outreach, regularly speaking at conferences and contributing to medical journals to share her findings with the broader medical community. Her work has not only advanced the field of Fabry Disease research but also set new standards for clinical care and patient involvement in research.

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

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.