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.
Supporting rare disease research
The program’s ultimate goal is to accelerate progress against rare diseases by scaling successes of researchers and rare disease patient organizations.
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.
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.
Funder
The project is funded by the Chan Zuckerburg Initiative.
Project Impact
External Resources
State Perinatal Quality Collaboratives
List of PQCs funded by the Center for Disease Control and Prevention (CDC)
The Power of PQCs
Video showing the impact that PQCs have on the communities they serve. Produced by the NNPQC.
PQCs in the News
Articles in news outlets covering state PQCs, their activities, and the people that work in the collaboratives.
Patient Safety Bundles
From the Alliance for Innovation on Maternal Health. PSBs are collections of evidence-informed best practices that address clinically specific conditions in pregnant and postpartum people. The NNPQC helps provide TA and support to PQCs in adopting the core AIM Perinatal Mental Health Bundle.
Perinatal Quality Collaboratives
The CDC’s landing page for PQCs, including helpful infographics, videos, and links to help explain what PQCs are, how they work, and stories, learnings, and publications that have come out of the state PQCs.
Related Content
Resources produced by the Rare As One Network Workstream Facilitation project or on related topics
Meet Our Team
“In our deep organizational work to move along the Equity Systems Continuum from a Savior-Designed System to an Equity-Empowered System, we acknowledge the power of action. The potential is limitless for today’s commitments to improve the systems in which health care and public health professionals work and families receive care.”
