2025 Strategy Summit

March 7-8, 2025 | Chicago, IL

The Bardet Biedl Syndrome Foundation convened a landmark Strategy Summit, bringing together key stakeholders from around the world. This summit was made possible by a transformative, multi-year grant from the Chan Zuckerberg Initiative (CZI), aimed at strengthening organizational capacity and amplifying the global patient voice in advancing care and treatment for Bardet Biedl Syndrome (BBS). Attendees included board members, individuals living with BBS and their families, researchers, and leaders of international BBS organizations. Together, they aligned on a bold strategic direction to maximize the impact of the global BBS community.

The summit outlined four key priorities. First, to strengthen organizational capacity, the Foundation will transition from a volunteer-led structure to a professionally staffed nonprofit. This includes hiring a CEO to oversee operations and strategy, forming an international board and a medical advisory board, and establishing long-term financial systems to ensure sustainability beyond current grant funding.

Second, the Foundation is committed to enhancing patient advocacy, support, and community engagement. This includes expanding resources for BBS adults—such as employment support, education guidance, mentorship, and access to specialized care—and creating a structured Community Liaison program to connect families to resources and services. Mental health and peer support were also identified as critical needs, along with increasing patient involvement in shaping research priorities through partnerships like the CZI Rare Disease Network.

Third, advancing research and clinical collaboration is a central goal. Plans include establishing standardized care guidelines and Centers of Excellence to ensure high-quality, consistent treatment. Expanding data collection through patient registries like CRIBBS, facilitating international research partnerships, and deepening collaboration with medical professionals through education and outreach are also high priorities.

Finally, the Foundation is focused on significantly improving fundraising, marketing, and outreach. This involves diversifying revenue streams through grants, individual giving, and community-led events—including the development of a “Fundraiser-in-a-Box” toolkit. A major website redesign is underway to ensure families, clinicians, and researchers have access to up-to-date, accessible, and multilingual information. Additional efforts will focus on improving SEO, ADA compliance, and targeted outreach through digital channels such as YouTube, email newsletters, and social media.

These efforts aim to establish a clear path forward for the Foundation and its global partners. By aligning strategy, strengthening infrastructure, and amplifying the voices of those impacted by BBS, the BBS Foundation is poised to lead transformative change in research, care, and community support.