Equity & Ethics in Context – Raising the Bar for Access in Rare Disease

The Rare Disease Medical Ethics Landscape

• Opportunities and challenges in informed consent for investigational therapies and emerging science
• Cultural competency in patient education and disclosures as a tool to build trust in research activities
• Inclusivity & Representation in the Context of Small Patient Populations
• Opportunities to advance research through ethics and equity o Discuss clear gaps highlighted in the pandemic which need to be addressed
• Discuss how inclusive data sets can create higher quality data and outcomes and better treatments for patients