ashanthi de silva MPA
When Ashanthi was 4 years old, she became the first person in the world to receive gene therapy, appearing in national and international media programs as an advocate for advancing gene therapy for her disease community and beyond. She continues to focus on empowering rare disease communities by building resources, content, and partnerships that foster connectivity and engagement for patient organizations. As a content creator for The Mighty, the world’s largest digital health platform, she has played an integral part in growing their rare disease community through strategic partnership building and collaborations with rare disease nonprofits, including Global Genes, the National Organization for Rare Disorders, EDS Society, Cure SMA, and others. She has also created patient-centric branded content for biotech and pharma companies. In 2018, Ashanthi was awarded the Biotechnology History Maker award at the 25th Biotechnology Innovation Organization (BIO) Convention for contributions to science and patient advocacy.
Throughout her career she has chosen to work with underrepresented and underserved communities, and uses her expertise to empower and engage patient voices in the rare disease space. She has organized and spoken on numerous panels about patient-centric drug development and the future of gene and transformative therapies for patients and families. Ashanthi is committed to diversifying the rare disease advocacy space, increasing access to resources for communities who have been traditionally disconnected from health services, and creating equitable patient programs within industry that foster trust and increase collaboration with rare disease communities.  
Ashanthi holds a dual B.A. in International Studies and Arabic, as well as a Masters in Public Administration from The Ohio State University, and is a two-time recipient of the Foreign Language and Area Studies Fellowship (FLAS) award. Ashanthi has worked with international nonprofit organizations in Amman, Jordan, as well as Israel/Palestine, focusing on serving the unique needs of refugee populations. Her skills include medical writing, research, creating internal and external DEI initiatives, event planning, and public speaking. 
  • LinkedIn - White Circle

The Rare Advocacy Movement (RAM) is a rare disease focused community advocacy initiative focused on addressing the issues that affect the real world people of the rare disease community.  RAM serves as a community-based professional network and Center of Insight (COI) for rare disease focused stakeholders seeking authentic connections and unadulterated community insights. The RAM membership is comprised of a network of patient advocacy community expert professionals that have vowed to abide by the established Code of Conduct for Membership. As a result, every current RAM member has made a public vow to always act in the best interest of the rare disease community.