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Recently, Kasha and Mike Morris, Founders of the TANGO2 Research Foundation met with other Chan Zuckerberg Initiative (CZI) Rare As One Project patient-led organizations from the Northeast area.

The gathering was a wonderful opportunity to get to know the other rare disease organizations better, share common challenges and learn from one another’s successes.

Our Foundation is one of 50 patient-led organizations receiving funding from the Chan  Zuckerberg Initiative Rare As One Project, aimed at supporting and lifting up the work that patient communities are doing to accelerate research and drive progress in the fight against rare diseases.

The TANGO2 Research Foundation received a grant from the CZI Rare As One Project to continue the work to find treatments and a cure. The CZI Rare As One Project is committed to uniting us with other rare disease communities in their quest for cures. As such, our Foundation has been looking forward to the opportunity to meet with other CZI Rare As One Project cohorts in person to collaborate and connect.

During this gathering, the groups from different patient-led organizations, discussed several topics such as collaborative research, attracting board of directors, and drug repurposing among many other things.

The gathering was a great start in the right direction for rare disease organizations and the hope is to have a regional gathering once a trimester. Our Foundation looks forward to continued opportunities to learn and share our experiences with other rare disease organizations!