Certification Training

General Session lectures may vary slightly depending on faculty’s availability.

CoRDS Registry: Everything You Wanted (and Should) Know: An important lecture that provides a better understanding of how the CoRDs Registry operates and benefits the rare disease community.

Drug Development: An Overview: Discussion surrounding what is involved with and who are the stakeholders throughout the drug development process. Topics included in this lecture are the challenges of developing a drug, helpful resources, regulatory requirements, development strategies, the Orphan Drug Act (ODA), 21st Century Cures, and the differences between the FDA and the EMA.

Drug Development and Patient Advocacy Groups: A current topic of conversation, this lecture reiterates the importance of including the patient voice in the Clinical Trial Process. Topics covered may include Patient Reported Outcomes, natural history studies, focus groups, registries, biobanks, and protocol review.

History of Patient Advocacy and Rare Disease Community: Discussion on the evolving role of patient advocacy in the pharmaceutical industry company which includes the identification of major societal, policy and legislative influences that have contributed to its changing role.

Sanford: Who We Are; What We Do: This lecture is an introduction to Sanford Research Institute’s research programs, resources and services provided to the rare disease community.

Communication for Patient Advocacy Organizations: Common sense approaches to developing a solid plan for communicating with the patient community. Faculty: Frieda Hernandez

Maintaining a Patient Advocacy Organization: An Annual Check-up: Discussion of governance and board best practices needed to manage a responsible and effective patient advocacy organization. Faculty: David LaGreca

Introduction to Rare Disease Public Policy: Providing an understanding of how a Patient Advocacy Organization can participate in legislative matters and encourage its community to do so. Offers an explanation of the alphabet soup of government acronyms and important health legislation. Faculty: Diane Dorman

Working with Industry: Discover the best practices of how to engage in an appropriate and transparent relationship with companies. Faculty: Barbara Wedehase

Reimbursement and Access to Drugs: Receive a better understanding of how individuals can utilize Patient Assistance Programs, Medicare and Medicaid programs to improve their ability to get and afford medications. Faculty: Maria Hardin

Understanding the Clinical Trial Process: Provide PAOs the tools to share with their respective communities what is involved with a clinical trial and the importance of considering to be a participant. Faculty: Barbara Handelin

Public Policy on State and Local Levels: Gain the understanding of the importance of building state and local legislative relationships. Faculty: Meg Leal

CoRDS Registry for PAOs: Discover the nuts and bolts along with the value of bringing a CoRDs registry to your patient community. Faculty: Austin Letcher

Building and Sustaining Non-Profit Relationships: Understanding the need to foster and keep ties with individuals, community, healthcare professionals and other entities that can enhance the mission and vision of a non-profit. Faculty: David LaGreca and Nancy Harris