Rare as One Network

We’re part of the Chan Zuckerberg Initiative’s Rare As One Network — a group of 30 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. We’re proud to be creating a patient-led research network to accelerate research and find treatment options for people with CLOVES and PIK3CA Related Conditions.

CLOVES Syndrome Community, in collaboration with Dr. Denise Adams of Children’s Hospital of Philadelphia, Dr. Jean Zhao of Dana-Farber Cancer Institute and Dr. Miikka Vikkula, Co-Director of de Duve Institute, is planning a virtual International Scientific Meeting for PIK3CA related conditions.   We will meet virtually on Thursday October 28 and Friday October 29, 2021 from 10am – 3pm EST.  Please sign up here to receive information about registration process, abstract submission timeline and agenda.