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Event Details
NewYorkBIO partners with patient advocacy groups to connect leaders in the patient community with leaders in the biotech and life science fields. The Summit features panel discussions with representatives from across the patient and life science ecosystems. NewYorkBIO focuses on linking patients with companies and researchers who work to discover and develop treatments and cures.
https://us02web.zoom.us/j/83164214848
New York Genome Center
6th Avenue 101
New York
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Agenda
- 12:30 PM - 1:00 PMRegistration and Networking
- 1:00 PM - 1:05 PMWelcome Remarks
Jennifer Hawks Bland
Chief Executive Officer at NewYorkBIO
- 1:05 PM - 1:30 PMFireside Chat: Managing a Rare Disease: Rett Syndrome: Iโm a Dad & a PhysicianFireside Chat with parent/caregiver of rare disease patient.
Jessica Klein
Advocacy & Industry Relations Liaison, East Region at Acadia Pharmaceuticals
Dr. Paul Zamudio
Intensivist at Sound Physicans
- 1:30 PM - 1:45 PMPatient Perspective: Brad Watts, Prior CAR-T Patient & Patient Advocate, The Emily Whitehead Foundation
Brad Watts
Prior CAR-T Patient & Patient Advocate at The Emily Whitehead Foundation
- 1:45 PM - 2:30 PMPanel Discussion- 340BThe Federal 340B Program has grown exponentially over the past decade, but are the patients the ones who are benefitting the most from the expansion?
Kim Czubaruk
Associate Vice President of Policy at CancerCare
Suzanna Masartis
Chief Executive Officer at Community Liver Alliance
Ravan Patrick
ANGEL Advocate at Tigerlily Foundation
- 2:30 PM - 2:45 PMPatient Prospective: MacKay Jimeson, Executive Director, Patients Rising
MacKay Jimeson
Executive Director of Patients Rising
- 2:45 PM - 3:15 PMNetworking Break
- 3:15 PM - 3:45 PMFireside Chat: Purpose, Partnership, and Patients: Engagement in Rare DiseaseA fireside chat style conversation with Pfizer's Gemma Mayman.
Jennifer Hawks Bland
Chief Executive Officer at NewYorkBIO
Gemma Mayman
Vice President, Specialty Care Patient Solutions and Engagement at Pfizer
- 3:45 PM - 4:00 PMPatient Perspective: Rob Long, Executive Director, Uplifting Athletes
Rob Long
Executive Director of Uplifting Athletes
- 4:00 PM - 4:45 PMPanel Discussion - Federal Uncertainty and the Impact on Patients and ResearchWith large scale national challenges like organizational defunding, it is urgent to understand how these changes impact healthcare structures and look to stabilize outcomes.
Dr. Cartier Esham
Executive Director of Alliance for a Stronger FDA
Annie Kennedy
Chief of Policy, Advocacy and Patient Engagement at EveryLife Foundation for Rare Diseases
Jenny Luray
Senior Vice President for Strategy and Public Engagement at Research!America
- 4:45 PM - 5:00 PMClosing Remarks
Jennifer Hawks Bland
Chief Executive Officer at NewYorkBIO
- 5:00 PM - 6:30 PMNetworking Reception
Speakers
Kim Czubaruk
Associate Vice President of Policy at CancerCare
Read BioDr. Cartier Esham
Executive Director of Alliance for a Stronger FDA
Read BioJennifer Hawks Bland
Chief Executive Officer at NewYorkBIO
Read BioMacKay Jimeson
Executive Director of Patients Rising
Read BioAnnie Kennedy
Chief of Policy, Advocacy and Patient Engagement at EveryLife Foundation for Rare Diseases
Read BioJessica Klein
Advocacy & Industry Relations Liaison, East Region at Acadia Pharmaceuticals
Read BioRob Long
Executive Director of Uplifting Athletes
Read BioJenny Luray
Senior Vice President for Strategy and Public Engagement at Research!America
Read BioSuzanna Masartis
Chief Executive Officer at Community Liver Alliance
Read BioGemma Mayman
Vice President, Specialty Care Patient Solutions and Engagement at Pfizer
Read BioRavan Patrick
ANGEL Advocate at Tigerlily Foundation
Read BioBrad Watts
Prior CAR-T Patient & Patient Advocate at The Emily Whitehead Foundation
Read BioDr. Paul Zamudio
Intensivist at Sound Physicans
Read Bio
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