12th Annual
Life Science Strategic Patient Advocacy Professional Education Course
September 28-29, 2023 | Virtual Event
*All times Central US
12th Annual
Life Science Strategic Patient Advocacy Professional Education Course
September 28-29, 2023
Virtual Event
*All Times Central US
Strengthening Patient Advocacy Relations by Bridging the Gap between Industry and Local Communities with a Focus on Diversification in Clinical Trials, Improved Health Literacy, and Solutions to Patient Affordability
Lisa Savitt
Vice President
SmithSolve
Patient Advocate
LUPUS FOUNDATION OF AMERICA
Patient Advocacy Professional
ACORDA THERAPEUTICS
(Former)
President/Founder
SYNGAP1 FOUNDATION
Executive Director, Patient Engagement and Advocacy
NEUROCRINE BIOSCIENCES
President
HEALTH CARE IMPROVEMENT FOUNDATION
Devra Densmore
Principal Consultant and Founder
ELEVATE ADVOCACY
Director, Patient Affairs – Office of Clinical Policy and Programs
Office of the Commissioner
U.S. FOOD AND DRUG ADMINISTRATION
Wendy Erler
VP Patient Experience
Alexion Pharmaceuticals
Senior Manager, Patient Advocacy & Professional Associations
MILESTONE PHARMACEUTICALS USA, INC.
Amanda Sowinski
Associate Director, Global Pompe Lead, Patient & Professional Advocacy
AMICUS THERAPEUTICS
Founder & CEO
THE PINK FUND
Kristina Davidson
Senior Director, Patient Advocacy
HORIZON THERAPEUTICS
Chris Smith
President & CEO
SMITHSOLVE
8:30 ZOOM SIGN-ON & VIRTUAL COFFEE, FEATURING:
» Private & public text chat
» Interactive polling
» Tech check
8:50 Q1 PRODUCTIONS OPENING REMARKS & PROGRAM WELCOME
9:00 CASE STUDY DISCUSSION: EXAMINING ADVOCACY’S INVOLVEMENT IN SUPPORTING CLINICAL TRIAL RECRUITMENT
This session will present and analyze a scenario to identify challenges and best practices for ensuring cross-functional collaboration within an organization, managing expectations, optimizing external communications, and working with advocacy organizations. You will hear from a seasoned advocacy organization leader about the PAO role in clinical trial awareness and working with industry partners.
Lisa Savitt, Vice President
SMITHSOLVE
Todd Bledsoe, Executive Director, Patient Engagement and Advocacy
NEUROCRINE BIOSCIENCES
Andrea Furia-Helms, Director, Patient Affairs – Office of Clinical Policy and Programs
Office of the Commissioner
U.S. FOOD AND DRUG ADMINISTRATION
9:45 BUILDING A BETTER PATH OF ENGAGEMENT WITH UNDER-REPRESENTED COMMUNITIES
• Leveraging the influence of smaller colleges, universities, and organizations
• Identifying local community actors and leaders to build partnerships
• Methods to engage in a more authentic, long-term, and sustainable way
• Practical perspectives in overcoming common barriers and lessons learned
Juddson Rupp, Senior Manager, Patient Advocacy & Professional Associations
MILESTONE PHARMACEUTICALS USA, INC.
Kim Schofield, Patient Advocate
LUPUS FOUNDATION OF AMERICA
Kristina Davidson, Senior Director, Patient Advocacy
HORIZON THERAPEUTICS
Wendy Erler, VP Patient Experience
ALEXION PHARMACEUTICALS
10:30 VIRTUAL NETWORKING & COFFEE BREAK
11:00 MOVING FROM PATIENT CENTRICITY TO PATIENT INCLUSIVITY
• Discussions on patient centricity and its paternalistic and objectifying impact
• Moving toward patient inclusive language and its relationship with DEI
• Examining unintentional ableism and its effects on patient communities
Courtney Firak, Patient Advocacy Professional
11:45 DEVELOPING HEALTH LITERATE, CULTURALLY SENSITIVE MATERIALS FOR PATIENTS IN PURSUIT OF HEALTH EQUITY
• Establishing the premise of healthy literacy to achieve health equity
• Perspectives on translating material when making presentations
• Ensuring sensitive material resonates with patients
• Exploring cultural humility and health literacy
Wendy Nickel, President
HEALTH CARE IMPROVEMENT FOUNDATION
12:30 Closing Remarks & Course Conclusion
8:30 ZOOM SIGN-ON & VIRTUAL COFFEE, FEATURING:
» Private & public text chat
» Interactive polling
» Tech check
8:50 Q1 PRODUCTIONS OPENING REMARKS & PROGRAM WELCOME
9:00 TECHNIQUES FOR ACQUIRING FINANCIAL RESOURCES FOR PATIENTS AND THEIR FAMILIES
• Relationship-building with hospitals, social workers, and social security
• Financial strategies to develop effective presentations that make an impact
• Efficient communication streams to get information to patients and family
Molly MacDonald, Founder & CEO
THE PINK FUND
Tierney Saccavino, Patient Advocacy Professional
ACORDA THERAPEUTICS (Former)
9:45 METHODS FOR IMPROVING CLINICAL TRIAL ACCESSIBILITY TO PATIENTS WITH SPECIFIC NEEDS
• Exploring impairments and restraint challenges that keep patients from trials
• Considerations for advocates to lift access barriers and improve patient engagement
• Examining approaches to meet the appropriate accommodations for patients
Amanda Sowinski, Associate Director, Global Pompe Lead, Patient & Professional Advocacy
AMICUS THERAPEUTICS
10:30 VIRTUAL NETWORKING & COFFEE BREAK
11:00 IDENTIFYING COMPLIANCE CHALLENGES AND EXPEDITING REMEDIATION STRATEGIES
• Review of most common legal roadblocks to advocacy initiatives
• Remaining abreast of legal updates influencing advocacy efforts
• Hand in hand work with in-house and external compliance teams
• Swiftly managing solutions to regain and/or maintain compliance
Monica Dudley-Weldon, President/Founder
SYNGAP1 FOUNDATION
Devra Densmore, Principal Consultant and Founder
ELEVATE ADVOCACY
Tierney Saccavino, Patient Advocacy Professional
ACORDA THERAPEUTICS (Former)
11:45 Closing Remarks & Course Conclusion
Previous Attendees Include:
Account Director, SIREN INTERACTIVE
Associate Director Advocacy Relations, BIOGEN IDEC
Associate Director Patient Advocacy, Multiple Sclerosis, GENZYME
Associate Director, Advocacy Relations, GENENTECH
Associate Director, Patient Advocacy, BIOMARIN PHARMACEUTICAL
Communications Manager, LUNDBECK
Deputy Director of Stakeholder Engagement, PCORI
Director Patient Advocacy, MILLENNIUM PHARMACEUTICALS
Director, Advocacy, CELGENE
Director, Alliance Development, SHIRE HGT
Director, Commercial Excellence, BAXTER
Executive Director, DYSTONIA MEDICAL RESEARCH FOUNDATION
Executive Director, LEUKEMIA & LYMPHOMA SOCIETY
Head of North America, Genetic Diseases, GENZYME
Patient Advocacy Relations; GENENTECH
Patient Advocate, LUPUS FOUNDATION OF AMERICA
Patient Engagement Liaison, US Neurology; PTCBIO
President, GLOBAL HEALTHY LIVING FOUNDATION
President, Health Care Improvement Foundation; CC ALLIANCE
President, MARK KRUEGER & ASSOCIATES, INC.
Senior Director Regulatory Affairs, GENZYME
Senior Director, Global Patient Advocacy, SANOFI GENZYME
Senior Director, Patient Advocacy, INTERCEPT PHARMACEUTICALS
Senior Manager, Grant Management Department, ABBVIE
Senior Manager, Patient Advocacy, HORIZON THERAPEUTICS
Senior Vice President, JPA
Senior Director, Global Patient Advocacy, BIOMARIN
Strategic advocacy relations & stakeholder engagement, MEI PHARMA
VP-Global Head Patient Experience, ASTRAZENECA
VP-Head of Global Patient Advocacy and Policy, ARGENX
VP, Global Patient Advocacy, GENZYME
VP, Patient Advocacy, CELGENE
VP and Head, Global Medical Advocacy, BRISTOL-MYERS SQUIBB
VP, Patient Advocacy & Policy, OVASCIENCE
….And Many Many More
Who should attend:
Executives and industry professionals working within patient advocacy that will find this program of greatest relevance are those currently working within the healthcare industry, advocacy relations, patient advocacy and policy, and medical advocacy.
Job titles for this meeting include VPs, Directors, and Managers of:
- Patient Advocacy Relations
- Patient Advocacy Operations
- Patient Education Liaison
- Patient Assistance Programs (PAPs)
- Patient Access Programs











