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SDS Alliance Awarded Chan Zuckerberg Initiative “Rare As One” Grant

Woburn, MA (November 3rd, 2021) — The SDS Alliance is delighted to announce that the organization has been awarded a prestigious grant from the Chan Zuckerberg Initiative (CZI). The SDS Alliance is chosen as one of the 20 selected organizations from more than 200 applicants to be awarded the CZI “Rare As One” grant for organizational capacity building.

Each grantee will be awarded $600,000 total over the next three years.

“For biomedical research in rare diseases to advance quickly and effectively, patients must be full partners with scientists and clinicians in research,” said CZI Head of Science Cori Bargmann. “We’re proud to expand our cohort of Rare As One grantees and further support the rare disease ecosystem as we work towards diagnosis, treatments, and cures together.”

“Patients are experts in their own diseases, and their knowledge and commitment to advancing progress in their disease areas has the power to center patient priorities and dramatically accelerate the pace of research,” said Heidi Bjornson-Pennell, CZI Rare As One Program Manager. “The RAO Network is proud to lift up these efforts by offering new tools, funding, and capacity-building support and training to help these organizations grow and scale.”

“We are incredibly humbled and grateful to be given this opportunity to advance the development of international collaborative research infrastructure, strengthen our organizational capacity, implement our patients’ priorities, and work synergistically with our research community — specifically for the benefit of our patient community,” said Dr. Eszter Hars, President and CEO of the SDS Alliance.

“We wouldn’t have won this prestigious grant award without our community’s support for our research initiatives, the mouse model project being a prime example. This grant has demonstrated that with proper management and expertise, our community’s donation can be leveraged to create significantly more impact than the face value of the donation would allow. This grant award is also a substantial endorsement of our strategy to drive SDS research. Research and therapy development is a very expensive endeavor, and we absolutely need to use any donation we receive wisely and leverage the funding we have whenever possible,” said Dr. Hars. “Although this award is an important acknowledgement of our efforts, there is so much work to be done. The SDS Alliance will continue to execute our strategy to drive research toward a cure.”

This grant will allow the SDS Alliance to roll out new patient-led projects as soon as early 2022.

About the Shwachman-Diamond Syndrome Alliance (SDS Alliance)

The SDS Alliance is a 501(3)c nonprofit serving the global SDS community, driving research to cure SDS by taking concrete steps to deliver new therapies that prevent bone marrow failure, leukemia, and other problems of SDS — turning HOPE into ACTION, and action into RESULTS. For more information, please visit

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


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