Day 3, Thursday, March 21st, 2024 - ET (Eastern Time, GMT-05:00)
Day 3, Thursday, March 21st, 2024 - ET (Eastern Time, GMT-05:00)
- Kristin Smedley - CEO, Curing Retinal Blindness Foundation
- Gwen Hyland - Head, Global Commercial Excellence, Alexion, AstaZeneca Rare Disease
In this presentation, Rare Patient Voice President and Founder Wes Michael will reveal exclusive findings of a recent RPV survey of rare disease family caregivers. Dealing with stress, financial challenges, finding support, feelings about the medical community, and ideas about engaging clinical research will be discussed.
- Wes Michael - President, Rare Patient Voice
Innovating Rare Disease Clinical Trials – Boosting Inclusion and Achieving Commercial Success
The challenges associated with Rare Disease clinical trials are daunting – from recruitment hurdles to infrastructure limitations, the barriers seem to be never ending. During this session, understand the relationship between inclusive and accessible clinical trials and how they drive improved commercial success.
- Uncover the paradox of wanting to include underserved communities in clinical trials while hesitating to approach them due to assumptions of disinterest
- Gain insights into strategic approaches for effective engagement with these communities
- Learn how to incorporate the FDA draft guidance on clinical trial diversity into the rare disease space
- Mary McGowan, MHRM - CEO, Foundation for Sarcoidosis Research
- Alycia Shilton Lloyd - Executive Director, Hematology-Oncology, Patient Innovation & Engagement, Global Medical & Scientific Affairs, Merck
- Tara Hastings - Patient Engagement Lead, Rare Diseases, Sanofi
In a space where connection and funding are everything, Rare Disease changemakers are constantly being challenged to innovate the ways in which they are spreading awareness and raising money. During this session, hear real life stories of the unique partnerships that manufacturers and advocacy groups have formed (ie. sports organizations, community health centers, etc.) to continue educating new audiences, receive funding and drive commercialization.
- Kate Gwinn - Specialist, Product Communications, Horizon
- Tricha Shivas - Chief Strategy Officer, Foundation for Sarcoidosis Research
- Ashley Point - President, Koolen-de Vries Syndrome Foundation
- Sarita Edwards - Founder, CEO and President, E.WE Foundation
Rare disease patients, families and caregivers face unique, and often increased, mental health challenges due to high levels of stress and uncertainty. During this session, uncover the importance of mental health support from a larger and more holistic point of view.
- Discuss who’s responsible for providing mental health services and highlight specific support programs
- Understand what it will take for a patient to be healthy and enabled to live their best life and in turn, how that benefits all stakeholders involved
Take a deeper dive into how intersectionality may impact certain patients at a higher stake
- Cristol Barrett O'Loughlin - Founder and CEO, Angel Aid
- Mary Morlino - Patient Navigator, UDNF
- Discuss the history and current state of drug pricing regulation and legislation from both the federal and state level
- Understand the intersection of the impacts of health policy issues to PBMs and pharmaceutical manufacturers, including where the two entities align, despite other differences
- Caitlin Berry - Senior Principal, Public Policy and Government Affairs, Prime Therapeutics
Join us for an engaging benchmarking session that delves into the latest trends and strategies reshaping patient access, assistance, market access, pharmacy operations and rare disease management in the life sciences industry. Explore key metrics, best practices, and innovative approaches that are driving success in these critical areas. Gain valuable insights from industry leaders and benchmark your organization's performance against industry standards to uncover new opportunities for growth and improvement.
- Shawn Adeoye - Associate Director, Strategy, Patient Access and Affordability Solutions Marketing Team, Astellas