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.
August 2020 to January 2022
- 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.
Preparing Children with Special Healthcare Needs for Transition of Care
Transitioning from pediatric to adult care can be challenging for any young person, but those challenges are often amplified for children with special healthcare needs. Two young adults with complex medical conditions share their experience with transitioning from pediatric to adult care.
NICHQ Employee Spotlight: Nathaniel Ray Pickett, Ph.D.
Each month, we’re shining a spotlight on a NICHQ employee, asking them to share their memories, advice, and goals. This month, NICHQ Web & Product Manager Nathanial Ray Pickett, Ph.D., shares his untraditional path to working in MCH, while highlighting his passion for equity, resisting oppression, and giving voice to the voiceless.
TRANSCRIPT | Connecting Infant and Maternal Health Outcomes – Prematurity Awareness Month
Our main story this episode highlights he links between maternal and infant health, and the impacts of preterm birth on health outcomes for mothers, birthing people, and babies. Hear from NICHQ VP of Equity and Innovation Dr. Stacy Scott, Ph.D. D, MPA, who shares some equity considerations regarding disparate rates of preterm birth, infant mortality, and maternal mortality. Dr. Zsakeba Henderson, MD, FACOG, NICHQ’s senior health advisor, also connects the impact of maternal health on infant health outcomes while shining a light on the U.S. maternal mortality crisis and current policy initiatives that can help reverse maternal mortality trends.
NICHQ Employee Spotlight: Callie Rowland
Each month, we’re shining a spotlight on a NICHQ employee, asking them to share their memories, advice, and goals. This month, NICHQ Project Manager Callie Rowland, MPH, shares her passion for working to affect change in the system, serving all mothers and children, and working for an organization that aims to help create more equitable systems.
4 Strategies for Transitioning from Pediatric to Adult Care for People Living with Sickle Cell Disease
Whether transitioning to college or a full-time job, it's a time when young adults are going to be establishing their independence from their nuclear family and taking responsibility for their own needs. For a young person with special healthcare needs such as SCD, the responsibilities are compounded by the additional need to begin transitioning from pediatric to adult care. Read more for four helpful strategies for transitioning from pediatric to adult care for people living with sickle cell disease and other special health conditions.
TRANSCRIPT | Sickle Cell Awareness Month: Transitioning to College, Equity Considerations, and Resource Sharing
Our main story this episode highlights the need for resources for people living with sickle cell disease and strategies for transitioning from pediatric to adult care. We also reflect on National Infant Mortality Awareness Month and hear from NICHQ team member about connecting their personal and professional passion for equity. Thanks for joining us!