POC boy at POC doctor office

Initiatives

Rare As One Network Workstream Facilitation

We support the launch of patient-centered research networks by facilitating topical workstreams with grantees from the Rare As One Project (RAO), creating space for collaboration among RAO grantee organizations. 

The program's ultimate goal is to accelerate progress against rare diseases by scaling successes of researchers and rare disease patient organizations.

Learn about RAO | Meet RAO Grantees | Insight: Rare Diseases Deserve Our Attention

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Status: Active

August 2020 to November 2021

  • Who: Rare as One (RAO) is a project of the Chan Zuckerburg Initiative (CZI) that supports patients to accelerate progress against rare diseases. With support and guidance from patient communities, rare disease experts, and advocacy organizations, this program will help communities of patients, researchers, and clinicians work together to advance progress against their diseases and scale these efforts through capacity-building services. In this two-year award, grantees have begun to identify content areas for defined workstreams.
  • Funder: The project is funded by the Chan Zuckerburg Initiative.
  • Our Role: NICHQ will facilitate the five workstreams comprised of RAO grantee representatives to support the development of goals, processes for collaboration, measures, and outcomes in key areas of need for RAO grantee organizations. NICHQ will utilize a Collective Impact framework to support the workstreams by providing structure, establishing a shared measurement strategy, building engagement, and mobilizing resources. To ensure the workstreams are cohesive, active, and participant-driven, each workstream will have two co-chairs who will partner with NICHQ to facilitate discussion and decision-making.

Emily Kramer-Golinkoff, Dr. David Fajgenbaum, Dr. Maria Kefalas and her daughter Cal, Nasha Fitter and her daughter Amara, Onno Faber, and Tracy Dixon-Salazar and her daughter Savannah all have one thing in common: rare disease. Their journeys may be different, but their fight to find a cure connects them.