1:00pm Chair Introduction

Tom Whitehead, Founder, Emily Whitehead Foundation

1:05pm Presentation: Engaging Patient Communities to Advance Therapies

• Using a Patient Advocacy Created Patient Continuum ensures wide participation in advanced therapies:
  • Centralized third party education on new therapies.
  • National tumor board to assist in enrolling for clinical trials or dissemination of information on new treatments
  • Collection of longitudinal patient data for natural history studies and tissue samples for ongoing advancement of therapies
• Why Engage Patient Advocates as partners:
  • strong advocates for foundation, government and investment funding of therapies
  • Opportunities for outside advocacy to regulatory bodies (FDA, NCI, NIH) supportive of therapies
  • Communication platform to better design patient centered clinical trials
  • Ongoing opportunity to learn best from each other (what could be influencing the perception of success of your therapy in the patient community)  

Lisa Ward, Founder, Tough2gether on DIPG/DMG

1:20pm Presentation: Providing Access to Healing Medicines for People With Genetic Diseases

• Viralgen’s mission is to support its clients from development to the commercial manufacture of gene therapy drugs to ensure they obtain therapeutics of the highest quality, at the right time and at the right scale to meet the needs of their patients worldwide.
• Viralgen aspires to drive change in how genetic medicines are developed and manufactured, with that change rooted in empathy for patients.

Alexandra Coelho Bras, Regulatory Affairs Specialist, Viralgen

1:35pm Presentation: The Important and Critical Role of Patient and Caregivers’ Voices in the Development of Gene Therapies

• Why engaging and working closely with patient advocacy groups and patients/care givers is critical
• Listening and learning from the people living with the conditions every day
• The role of internal communications in keeping patients at the heart of everything you do

Farah Speer, Senior Vice President, AviadoBio

1:50pm Presentation: UK Initiatives Supporting Patient Engagement in ATMP Development: Better for Patients, Better for Developers

Jacqueline Barry, Chief Clinical Officer, Cell and Gene Therapy Catapult

2:05pm Closing Panel with Q&A

With all session participants joined by:

Sven Kili, CEO, Antion Biosciences