You are using an unsupported browser. Please update your browser to the latest version on or before July 31, 2020.
close

Showing articles from RDDS tag

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 Pa…

Building a Research Strategy Roadmap for Your Organization

_***Recommended for Patients/Advocates**_ **Strategizing for Success: Developing a Research Strategy for Your Foundation:** * Foundational elements of building a research development strategy for patient advocacy groups * Tactics to scale operations and leverage resources for maximum impact * Discuss how to id…

Advances in Clinical Trial Design & Real World Evidence in Rare Disease

_***Recommended for Young Investigators/Researchers**_ **Addressing the Need for Innovative Clinical Trials to Advance Rare Disease Therapies** * Challenges in traditional double-blind randomized clinical trial design for rare disease studies * Ethics and access to clinical trials in rare disease research **Bas…

Beyond Publish or Perish – Attracting Funding for Impact

_***Recommended for Young Investigators/Researchers**_ **Opportunities to Attract Funding for Rare Disease Research** * Funding from advocacy organizations and nonprofit organizations * Government/public grants and funding – NIH, DOD, and more * Novel funding sources emerging in rare disease research **Findin…

Welcome, Opening Remarks and Keynote Presentation – Collaborations, Community and Citizen Science

**Keynote Speaker: David Fajgenbaum, MD, MBA, MSc, Co-Founder & President, Castleman Disease Collaborative Network** Explore the evolution of patient-driven progress in research and the critical ways in which patients, advocates, and caregivers are changing the drug development paradigm. From patient engagement in en…

scroll to top icon