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SDS POPS
Global Patient Advocacy and Partnering Summit

The first global, virtual, meeting of its kind to provide patients, caregivers, scientists, physicians, and all other stakeholders with an opportunity to connect and discuss all things related to Shwachman-Diamond Syndrome research and advocacy.

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Agenda (coming soon)

Tentative, subject to change.

All times in ET (New York Time)

 1:00 PM - 2:00 PM   

Welcome and Patient Stories                 

Welcome by Dr. Eszter Hars
Mother of an SDS Patient, President & CEO, SDS Alliance

Featuring three SDS community members

  • TBD, person with SDS

  • TBD, person with SDS

  • TBD, person with SDS

2:00 PM - 3:00 PM  

What is research? What kinds of research can help improve patient's life and how can we support it? 

Featuring expert speakers

  • TBD, Clinical Trials 

  • TBD, Drug Repurposing 

  • TBD, Qualitative Research 

  • TBD, Comparative Effectiveness Research 

  • TBD, Population Genetics 

  • TBD, Natural History Studies 

 3:00 PM - 3:10 PM   

Bio Break

See you back here in a few!

 3:10 PM - 4:00 PM   

SDS Alliance supported research updates and new project accouncements featuring the patient voice.

Introduction by Dr. Eszter Hars

Featured Experts:

  • TBD
    Mouse Model Development for SBDS

  • TBD
    Patient Reported Outcomes

  • TBD
    Genetic Prevalence of EFL1

 4:00 PM - 5:00 PM   

Closing remarks, Networking, and Connections

A fun activity for all to connect. All attendees and speakers welcome!

Speakers (coming soon)

In alphabetical order

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Dr. Eszter Hars

Dr. Eszter Hars, Mother of an SDS patient, and Founder/President/CEO/Science Director of the Shwachman-Diamond Syndrome Alliance. Dr. Hars holds a Ph.D. in Molecular Biology from the University of Medicine and Dentistry of New Jersey, where she studied cancer and leukemia. She has over 20 years of experience in scientific research and the biotech industry. As VP of Regulatory Affairs at CytoVera Inc., a lab equipment developer for hematopoeitic stem cell banking, Dr. Hars was in charge of regulatory approval of medical devices by the U.S. Food and Drug Administration. Dr. Hars has also managed business development as well as customer relationships at Quosa Inc., an information technology company, which was acquired in 2012 by Elsevier, the largest scientific publisher in the world. Currently, Dr. Hars is President of a biotech startup that specializes in developing new tools for various new therapies, including CAR-T cell cancer therapy and beta cell replacement therapy for diabetes. Dr. Hars has been engaged in SDS community building and volunteering wherever possible, since her daughter was diagnosed with Shwachman-Diamond Syndrome (SDS) in 2015. In 2020, Dr. Hars founded the SDS Alliance, a 501(c)(3) nonprofit organization. Through the SDS Alliance, Dr. Hars is dedicated to accelerating the development of new therapies for SDS.

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