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Who We Are

Rare as One

In 2020, LGDA was selected to participate in the Chan Zuckerberg Initiative’s (CZI) Rare As One Project — a group of 30 patient-led organizations that are accelerating research and driving progress in the fight against rare diseases.

The Project aims to strengthen the efforts of the selected patient-led groups and will help these communities of patients, researchers, and clinicians work together to advance progress against their diseases and scale these efforts.

CZI provided funding of $600,000 over three years to build organizational capacity and sustainability and to lower the barriers to patient-led research and enable patient communities to learn from one another.

Through Rare As One, the LGDA expanded and will continue to develop a community which includes three interconnected networks: patient, clinical, and scientific to assist those affected by CLAs.