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

June 24, 2021

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


Stay Connected

Sign up for updates straight to your inbox.