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SDS Community Represented at the Chan Zuckerberg Initiative's Science and Society Meeting

This September, we took to opportunity to introduce the Shwachman-Diamond Syndrome community at the Chan Zuckerberg Initiative (CZI) Science and Society Meeting in California with a poster presentation focused on the resources and opportunities the SDS community has to offer. We earned a spot at this invitation-only meeting by being an awardee of the CZI Rare-as-One program. The meeting featured incredible success stories of patient advocacy organization in pushing for cures and groundbreaking collaboration opportunities. We are incredibly grateful for being part of this community and the transformative resources the program has bestowed on the SDS community.

This poster was created as part of the Scientific Community Engagement Fundamentals course by the Center for Scientific Collaboration and Community Engagement, which Dr. Eszter Hars had the great pleasure to participate in last summer. The poster highlights a variety of aspects of the community, such as

  • Community Overview to describe the community and how the different stakeholder groups and categories interact with each other

  • Community Management to describe how the current de facto community manager is fostering the community and making visible the skills that are at play

  • Community Membership to describe various personas in the community, highlighting what needs we may want to serve

  • Community Value generated through collaboration and why we are investing resources to do this work

  • Community Participation to describe the type of interactions that are involved in various programming and activities, exploring further how a Community Champions program fits in, and highlights Community Programming and future opportunities.

Would you like to learn more about this work? Let us know! We can schedule a community presentation and share more individually.

About the CZI Science in Society 2023 Annual Meeting:

We full-heartedly echo the sentiments shared by CZI:

We’re leaving our annual Science in Society Meeting invigorated by the power of partnership and the pivotal role of patients driving scientific progress in rare disease. This meeting was an opportunity for researchers, patients and stakeholders to pool knowledge, forge collaborations and address challenges and opportunities in diagnosis, equity, and the development of treatments and cures. The expanding community dedicated to advancing our understanding of rare diseases is genuinely remarkable!

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