Pre-Conference Workshops - EST/EDT (Eastern Daylight, GMT-4)
Pre-Conference Workshops - EST/EDT (Eastern Daylight, GMT-4)
Understand the importance of building trust and credibility between industry and patient populations to gain patient interest, participation, and collaboration
Recognize the barriers to patient empowerment and understand patient burden
Improve health literacy by ensuring transparency and simplicity in patient facing outreach and material
Discuss the importance of maintaining patient relationships through dissemination of results as well as gathering feedback to strengthen future research
- Jennifer Helfer - Senior Director, Patient Advocacy & Engagement, Corporate Affairs, Viridian Therapeutics, Inc.
- Mary Anne Meskis - Executive Director, Dravet Syndrome Foundation
- Elsa Lavita - Director, Patient Advocacy, MorphoSys
- Rebecca Stewart - CEO, Rare Revolution Magazine
Understand the difference between funding and development
Create development strategies and plans to aid in funding efforts
- Amanda Moore - CEO, Angelman Syndrome Foundation
- Ryan Sheedy - n/a, Rare Disease Parent and Caregiver
Take a look at federal and state initiatives to understand the top challenges and roadblocks currently being faced
Explore the potential risks associated in working with PAG and how to mitigate such risk to ensure compliance
- Paul Melmeyer - Vice President, Public Policy & Advocacy, Muscular Dystrophy Association
To close the workshop, attendees break into 3 groups to brainstorm on action plans based on learnings from the day. Facilitators guide participants on best practices and key takeaways that can be implemented back in their organizations. The groups are:
Group 1: Develop a Funding and Awareness Plan
Group 2: Next Steps for Legislative and Regulatory Change- Lobbying Initiatives
Group 3: Ensuring Equity in Programs and Initiatives
- Mary Anne Meskis - Executive Director, Dravet Syndrome Foundation
- Paul Melmeyer - Vice President, Public Policy & Advocacy, Muscular Dystrophy Association
- Jennifer Helfer - Senior Director, Patient Advocacy & Engagement, Corporate Affairs, Viridian Therapeutics, Inc.
Understand how these programs came to be and how they have evolved over the last few years
Gain insight the characteristics to look for to protect the programs
- Dawn Holcombe, MBA FACMPE ACHE - President, DGH Consulting
Gain insight directly from those on the front lines working to protect PAPs
Discuss how AFP’s affect various stakeholders in the healthcare space and where
Hear from key stakeholders about strategies and initiatives in play to combat these programs
- Dawn Holcombe, MBA FACMPE ACHE - President, DGH Consulting
- Liz Austin - Patient Foundation Head, Genentech
- Amy Niles - Chief Mission Officer, PAN Foundation
Attendees will break off into groups by stakeholder type to discuss and collaborate on how to protect the integrity of patient assistance.
- Dawn Holcombe, MBA FACMPE ACHE - President, DGH Consulting
- Define launch and product objectives for the organization
- Understand the importance of vision setting in the context of the broader organization
- Creating an effective game plan and playbook to ensure launch readiness
- Understand the role of the team, the importance of culture and the criticality of alignment
- Pick a launch strategy, stick to it, and measure it (and then change it)
- Frank Jaeger - Consultant, Nanodose Therapeutics, Inc.
Understand the importance of integrating patient support models into your launch strategy
Establish how to choose the right patient support model for your product and population
Discuss how to engage with key stakeholders when developing and operationalizing programs
- Rhonda Hughes - Head, Patient Services, Biogen
- Kelley O'Leary - Director of New Product Planning, Innovation and Strategy Patient Services, Biogen