For a Pharma company with an approved treatment for a rare disease, patient advocacy and community relations play an integral role in its expansion and progress. Without the support and trust of the rare disease community a pharmaceutical company cannot reach its patients, a reason why building and fostering strong relationships with the patient audience is absolutely critical. Amy Grover has been advocating, educating, and empowering the rare disease patient community for over 13 years. She stands at the helm of Catalysts’ patient outreach initiatives, making bonds stronger for a mutually beneficial existence. Amy partners with related patient organizations and assists in their efforts to help the patient community. She conducts patient advisory boards to ensure Catalyst is creating relevant and meaningful tools and resources to provide to patients. Amy regularly connects with the LEMS patient community to confirm that Catalyst is doing right by the community and living the mission of the company. While Amy is not entrenched in the research and development of life science products, her work is deeply connected to the rare disease space. It is her mission to create awareness for LEMS which is an ultra-rare disease where there hasn't been attention given to the community in the past. She understands the importance of her responsibilities as a liaison between her company and the patients.
Amy began her career in advocacy at Global Genes, a non-profit based in Southern California dedicated to serving the 350 million people affected by rare diseases globally. Amy is dedicated advocacy professional with 10 years of experience in educating over 500 small, medium, and large patient organizations on development and patient engagement. She managed the foundation alliance at Global Genes and offered counseling, tools, and resources. Through these efforts and educational opportunities, these organizations were able to grow and develop and excelled in finding and funding researchers, policy and legislation, capacity building, and community support.
• The importance of building community and connections in rare diseases.
• Why all stakeholders in rare diseases need to have open and honest communication.
• What does advocacy mean in rare diseases, and how can patients, parents, and caregivers fit into the advocacy role?
Connect with Amy
This episode was edited by : Ruwan Basnayake
This episode is sponsored by:
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