The LGS Foundation and the Chan Zuckerberg Initiative Rare As One Network

The LGS Foundation is proud to be part of the Chan Zuckerberg Initiative (CZI) Rare As One Network – a group of 50 patient-led organizations that are accelerating research and driving progress in the fight against rare diseases.

The LGS Foundation is among a select group of rare disease organizations to receive three years of funding to build a Collaborative Research Network and build organizational capacity.

Learn more about the LGS Foundation’s unrelenting search for better research and therapies. 

In 2019, the Chan Zuckerberg Initiative launched the Rare As One Network, funding patient-driven rare disease organizations to develop research networks, convene their communities, and identify shared researcher-patient prioritized goals in their disease areas. In a very short time, each of the Rare As One Network grantees has made significant progress in advancing research — effectively organizing and diversifying their patient communities, catalyzing research networks, raising research funds, shaping research priorities, developing research-enabling infrastructure and industry partnerships, and launching clinical trials.

We’re proud to work alongside a number of distinguished organizations that share our goal of finding treatments and cures for rare diseases.

LGS Foundation Research Progress & Capacity Building Updates


Thanks to the Rare As One Network, the LGS Foundation has been able to achieve many important milestones such as:

  • Hosting our LGS Research Meeting of the Minds to discuss disease-modifying therapies. The event also served to garner support and interest in LGS research from our community, families, and scientists alike.
  • Initiating a request for applications (RFA) to fund new research projects.
  • Increasing communications to the LGS community to emphasize the importance of research and cures and to update on LGS Foundation-funded research.
  • Hiring incredible new team members to support the ever-growing needs of our patient family community.
  • Participating in CZI-organized training to improve our work in research, awareness, community building, family support, and education.
  • Embracing new tools to decrease silos and improve teamwork.

“The LGS Foundation promises to be unrelenting in its search for better research and therapies.” – Tracy Dixon-Salazar, PhD

The LGS Foundation is building a network of researchers, clinicians, and patients to develop shared research priorities and co-develop new therapies. It aims to develop its strategic research vision around patient priorities and to be inclusive of patient voices.

Join us at one of our many research conferences as we bring researchers and those living with LGS together to discuss how we can find the cures, together.


About the Chan Zuckerberg Initiative

The Chan Zuckerberg Initiative was founded in 2015 to help solve some of society’s toughest challenges — from eradicating disease and improving education, to addressing the needs of our local communities. Our mission is to build a more inclusive, just, and healthy future for everyone. For more information, please visit

Updated: 8/7/2023