Professional Development

Conference Presentation: Destination: Patient Outcomes – Our Journey to Improving Patient Care

Beyond Tactics: Education Strategy and Planning in Rare Diseases

Sunday, January 21
3:30 PM - 5:00 PM
Location: Mediterranean 2

Physician Credits: 1.5

Nursing CE Credits: 1.5

Pharmacy Credits: 1.5

ACPE UAN: 0809-9999-18-122-L04-P (Knowledge)

Small patient populations. An even smaller pool of thought leaders and subject matter experts. Challenging regulatory requirements. These are just a few of the issues organizations may encounter when entering the rare disease space. Orphan drug development is hard. Traditional approaches used for common diseases may have limited or no application when it comes to rare diseases.

First, operating from a shared understanding that patients with rare diseases are in desperate need of these treatments, can and should serve as the principal guiding force for crafting and implementing an effective strategy. Second, relationships are a critical success factor in rare diseases. Identifying the right internal and external stakeholders and knowing when and how to engage them in purposeful communication and collaboration is a strategic imperative. Third, the challenges of being an N of 1 (or 2) in a highly scrutinized environment means the data must be compelling and tell a value story that resonates with patients, providers, payers and regulators. For these reasons and more, the educational strategy has a role to play that far exceeds that of supporting tactic in a department sub-function. In the case of rare disease, a carefully crafted education strategy can be successfully implemented and leveraged throughout the lifecycle of a rare disease product.

The proposed session will serve as a launchpad for a robust, interactive and patient-centered discussion about the rare disease landscape; its key stakeholders; earlier and appropriate involvement of the education strategist(s) and team in lifecycle planning; and potential benchmarks of a successful education strategy. We’ll take a hybrid learning approach with a brief didactic presentation, case example(s) with panel Q&A, a strategy workshop, and a special technology showcase to stimulate ideas about non-traditional education interventions in rare diseases.

Learning Objectives:

Greselda Butler

Senior Manager, Grants and Contributions
Otsuka Pharmaceutical Development & Commercialization, Inc.
Rockville, Maryland

Greselda Butler is a 20-year veteran of healthcare education and medical communications, having held a variety of roles in grant writing, educational design, curriculum development, program management, implementation, and business development in for profit and nonprofit settings. Greselda joined the Otsuka US Medical Affairs grants office in 2012 and has responsibilities for all disease states as well as healthcare-related charitable contributions and corporate philanthropy. She is a distinguished member of, mentor, and volunteer for the Alliance for Continuing Education in the Health Professions, and co-author of The Insider’s Guide to Medical Education Grants: Strategies for Effective Lifecycle Management, a curated resource for health education professionals. “Even as healthcare is constantly evolving there are a myriad of opportunities to elevate the practice of contemporary medicine. In my professional role and as a healthcare consumer, I’m inspired to use my access to advocate on behalf of the profession and the patient.”


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Hong J. Na

Associate Director, Medical Education
Teva Pharmaceuticals
Frazer, Pennsylvania

Hong Jin Na, MS, EdD candidate, is the Associate Director, Medical Education at Teva Pharmaceuticals and oversees independent medical education strategies for Oncology, Respiratory, & CNS franchises and is responsible for the end-to-end management of all medical education grant proposals for therapeutic areas within those franchises. Known by his friends & colleagues as “Jin”, he has over 17 years of experience in the pharmaceutical & medical education industries.
Jin is a graduate of the Philadelphia College of Pharmacy and Science (1992) where he received a bachelor’s degree in Pharmacology and Toxicology and earned a Master of Science in Biomedical Writing from the now University of the Sciences in Philadelphia (2001). He also holds a Certificate in Paralegal Education from Villanova University (1999). Jin is currently a doctoral candidate in the Doctorate in Educational Leadership program at Rowan University, where he hopes to graduate in the spring of 2019.

Jin is an active member of the University of the Sciences Alumni Association and has served on the Board of Directors for many years. He currently serves as the first Asian American President of the University of the Sciences Alumni Association. Jin is also member of the Alliance for Continuing Education in the Health Professions (ACEHP), Global Alliance for Medical Education (GAME) and Coalition for CME


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Dustin Ensign

Manager, Global Grants and Independent Medical Education
Brisbane, California

Hi! I am Dustin Ensign CHCP, Manager of Global Grants and Independent Medical Education at Ultragenyx Pharmaceutical. I have been part of Medical Education for nearly 10 years, focusing on operations, analytics, strategy, and innovation in the commercial supporter space. Ultragenyx Pharmaceutical is a California-based biotechnology company focused on expedited drug development for rare and ultra-rare genetic disorders.


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Sarah Krug

Founder, Health Collaboratory
New York, New York

Sarah Krüg is the founder of The Health Collaboratory, a global innovations hub that paves the path for participatory co-design and collaboration in healthcare, and is focused on amplifying the voice of the patient and caregiver in the design, development and continuous improvement of innovations created to serve them. Sarah is also the CEO of CANCER101, a patient advocacy organization whose mission is to help patients and caregivers navigate the cancer journey and partner with their healthcare team to make informed decisions. She is the Executive Director and Past President of the Society for Participatory Medicine, a patient: clinician member driven organization whose mission is to enable collaborative partnerships between patients and healthcare professionals. Sarah serves on the board of the National Organization of Rare Diseases and is Research Chair of the Cancer Education Network. She previously held the position of Global Education Director in the Medical Education Group at Pfizer. She also established the Global Investigator Initiated Research Program at Pfizer. Prior to joining Pfizer, Sarah spearheaded the development of the Pediatric Disease Management clinical pathways and conducted clinical research at Memorial Sloan- Kettering Cancer Center.


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Beyond Tactics: Education Strategy and Planning in Rare Diseases

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