Virtual Connect Webinar: Insights, Impact & Collaboration

On February 24, 2026, Simons Searchlight hosted a Virtual Connect webinar, Insights, Impact & Collaboration, bringing together patient advocacy group (PAG) leaders for a meaningful discussion about research resources, partnership opportunities, and long-term engagement in rare disease research.

This session was designed to provide practical, shareable insights into Simons Foundation Autism Research Initiative (SFARI) research resources available to Simons Searchlight communities — and to explore how PAGs can help researchers and industry partners better discover and use these tools.

🎥 Watch the full webinar recording below

📄 Download the presentation slides (PDF), including Q&A responses, to share with your community.

Introduction to Simons Foundation Research Resources for Simons Searchlight Communities

Lauren Bauer, Senior Director, SFARI Cohorts and Biorepositories, and Casey Lehman, Senior Project Director of Research Match, provided an overview of the research infrastructure supporting the Simons Searchlight community.

They highlighted:

• The role of SFARI as the funder and steward of Simons Searchlight data
• How clinical data and biospecimens are curated and shared with qualified researchers
• The purpose and impact of Research Match in connecting scientists with participant communities
• Ways PAGs can amplify awareness of these research opportunities

The discussion emphasized how shared data and samples contribute to scientific discovery, while ensuring participants always maintain choice and control over their involvement.

From Resources to Impact: Supporting Long-Term Engagement Together

Astrid Rasmussen, Senior Program Manager, and Erica Jones, Outreach Manager, focused on strengthening long-term collaboration with patient advocacy groups.

This portion of the webinar explored:

• How PAGs can share research opportunities within their networks
• What tools or information would make outreach easier and more meaningful
• How to better understand and support the evolving needs of communities
• Strategies to encourage sustained participation across the lifespan

The session also included live polls and open discussion, allowing PAG leaders to share feedback on what would help researchers, clinicians, and industry partners better discover and use SFARI and Simons Searchlight resources.

Why This Conversation Matters

At its core, this webinar reinforced a shared goal: advancing research together.

By strengthening connections between families, patient advocacy groups, researchers, and industry partners, Simons Searchlight continues to build a research ecosystem that is collaborative, transparent, and participant-centered.

We are deeply grateful to the PAG leaders who joined us and shared their insights. Your partnership helps ensure that research remains responsive to the needs of the communities it serves.

To learn more about Simons Searchlight and how to get involved, visit:
https://www.simonssearchlight.org

If you have questions about SFARI resources or Research Match, we welcome you to connect with their teams at https://www.sfari.org/about-sfari/contact-us/.