Neena Nizar | Assoc. Director, Patient Advocacy Strategy, ICON Centre for Rare Diseases; President
The Jansens Foundation

Day 1 - World Orphan Drug Congress USA 2024 @ 11:25

The pivotal role patient advocacy organizations play in driving rare disease therapeutic development

• Understand how patient advocacy organizations drive therapeutic development in the rare disease space
• How to effectively engage and partner with patient advocacy organizations to develop meaningful treatments
• Gain insight into the “how, when and where” patient advocacy can significantly impact the drug development process

Neena Nizar, Assoc. Director, Patient Advocacy Strategy, ICON Centre for Rare Diseases; President, The Jansens Foundation

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Neena Nizar / The pivotal role patient advocacy organizations play in driving rare disease therapeutic development

Neena Nizar, Assoc. Director, Patient Advocacy Strategy, ICON Centre for Rare Diseases; President,
The Jansens Foundation

Dr Nizar has 20 years of rare disease patient advocacy strategy experience focused on development of nano-rare therapies and patient-centered outcomes. She has deep expertise in diversity, equity, and inclusion (DEI) strategy and in Middle Eastern/Asian patient advocacy landscapes with experience...

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Jana Benesh, Director of Therapeutic Expertise, ICON Centre for Rare Diseases

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Jana Benesh / The pivotal role patient advocacy organizations play in driving rare disease therapeutic development

Jana Benesh, Director of Therapeutic Expertise,
ICON Centre for Rare Diseases

Dr Benesh is a neuroscientist and molecular biologist by training with over 15 years of experience in basic and clinical research. She currently serves as a Director of Therapeutic Expertise in ICON's Centre for Rare Diseases and focuses on strategy and design of rare disease clinical...

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Day 2 - World Orphan Drug Congress USA 2024 @ 13:00

Engaging minority communities: Collaborative practices and long-term success

Moderator: Neena Nizar, Assoc. Director, Patient Advocacy Strategy, ICON Centre for Rare Diseases; President, The Jansens Foundation

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Neena Nizar / Engaging minority communities: Collaborative practices and long-term success

Neena Nizar, Assoc. Director, Patient Advocacy Strategy, ICON Centre for Rare Diseases; President,
The Jansens Foundation

Dr Nizar has 20 years of rare disease patient advocacy strategy experience focused on development of nano-rare therapies and patient-centered outcomes. She has deep expertise in diversity, equity, and inclusion (DEI) strategy and in Middle Eastern/Asian patient advocacy landscapes with experience...

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Deborah Requesens, Director, JumpStart, Orphan Disease Center, University of Pennsylvania, Perelman School of Medicine

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Deborah Requesens / Engaging minority communities: Collaborative practices and long-term success

Deborah Requesens, Director, JumpStart,
Orphan Disease Center, University of Pennsylvania, Perelman School of Medicine

Deborah Requesens, PhD, is the Director of the Orphan Disease Center’s JumpStart Program. This program serves to establish and progress research agendas in emerging and neglected diseases. She partners with patient groups and scientists to encourage scientific collaboration and drive therapeutic...

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Victoria Arteaga, Co-founder, SHER Hispanic Society for Rare Diseases

Mary McGowan, Chief Executive Officer, Foundation for Sarcoidosis Research