Rare as One Network

We’re part of the Chan Zuckerberg Initiative’s 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 Chan Zuckerberg Initiative’s Rare As One Project aims to strengthen the efforts of patient-led groups. It will help communities of patients, researchers, and clinicians work together to advance progress against their diseases and scale these efforts. Working in partnership with the rare disease community, the Rare As One Project will create shared infrastructure to lower the barriers to patient-led research and enable patient communities to learn from one another.  No one is more motivated than patients to drive progress against their disease. 

The CLOVES Syndrome Community profile and the profiles of the other 49 patient-led organizations can be found here

Our goal with this grant is to create a patient-led research network with the aim to accelerate research and find treatment options for people with CLOVES and PIK3CA Related Conditions. You can follow our progress and sign up to receive updates here