Breaking Barriers with Patient-Owned Data Platforms With Karmen Trzupek

Welcome to Living With… a YouTube series presented by the Hypersomnia Foundation. In this special episode, Claire Wylds-Wright, CEO of the Hypersomnia Foundation, sits down with her Co-Founder of Sleep Consortium, Lindsay Jesteadt, and Karmen Trzupek of Global Genes.

In this episode, Karmen, Lindsay, and Claire describe the partnership between Sleep Consortium and Global Genes. They explain how, through Rare-X a research program of Global Genes, Sleep Consortium is working to revolutionize research, speed up diagnosis, create better treatment plans, and enhance understanding of Central Disorders of Hypersomnolence.

Karmen Trzupek is the Senior Director of Scientific Programs at Global Genes. In this role, she is responsible for developing collaborative programs and partnerships that maximize the RARE-X data platform to advance rare disease understanding and support industry-supported therapeutic studies. By background and training, Karmen is a clinical genetic counselor. She received her graduate degree from Northwestern University and has worked in both academia and telemedicine. In her last role, she directed clinical trial services at InformedDNA, providing patient support, genetic testing, and clinical trial screening for patients impacted by rare disorders.

To learn more about Sleep Consortium’s groundbreaking data collection platform and to participate, visit sleepconsortium.org. Be sure to follow them on Instagram @sleep_consortium and LinkedIn @sleep-consortium-inc.

To learn more about Global Genes and their work to empower individuals and communities affected by rare diseases go to globalgenes.org. Be sure to follow them on Instagram @globalgenes and LinkedIn @global-genes-rare-project

Living With… is hosted by Claire Wylds-Wright with the Hypersomnia Foundation and produced by Elizabeth Joy Windom of Windhaven Productions.

A special thanks to our sponsors!
Platinum Sponsor — Jazz Pharmaceuticals
Gold Sponsors — Avadel Pharmaceuticals and Harmony Biosciences
Bronze Sponsors — Zevra Therapeutics and Takeda Pharmaceuticals
Sponsor — Centessa Pharmaceuticals