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.
Supporting Indigenous Families for Improved Health Outcomes
Indigenous mothers and birthing people, fathers, partners, caregivers, and families, can speak for themselves. So, make sure seats are available – and filled – on your projects, your teams, your boards. Many projects within the MCH field have steering committees, and all should have family representation. As I hope you’ve intuited, it’s not enough to carry a message. When I think about justice, equity, diversity, and inclusion with regard to our committees, our faculty experts, or even in our improvement advisors, I have begun to ask the question: Are there people from American Indian and Alaska Native communities here?
Top NICHQ Resources for Pursuing Change in 2022
Browse a collection of NICHQ articles, webinars, and resources that your community found most valuable in 2022.
Look for NICHQ at 2022 American Public Health Association Annual Meeting
Join the National Institute for Children's Health Quality (NICHQ) on Nov. 6 at 2 p.m. for The Ever-Evolving Path to Equity in Children’s Health, a panel highlighting the evolution of NICHQ's equity work at the 2022 American Public Health Association Annual Meeting.
NAPPSS-IIN Hosting Community of Practice Meetings to address policies and Share Experiences about Safe Sleep and Breastfeeding
The NICHQ National Action Partnership to Promote Safe Sleep Improvement and Innovation Network (NAPPSS-IIN) project will continue to convene six Community of Practice (CoP) groups from September 2022 – March 2023. CoPs include Birthing Professionals, Community Advocacy Organizations, Community-Based Home Visitors, Early Childcare Providers, First Responders, and Researchers. Each group will convene twice to continue to address policies, improve skills, and learn from each other’s experiences in the areas of safe sleep and breastfeeding.
NICHQ Employee Spotlight: Kelly Edwards, MPH, Senior Project Manager
Kelly Edwards discusses her journey from NICHQ intern to Senior Project Manager, and shares highlights and key takeaways from the six NICHQ projects she's supported.
Children and Their Families Have a Right to Gender-Affirming Healthcare
As physicians, public health professionals, and care providers, we have an obligation to support youth with unique healthcare needs who are at higher risk for negative health outcomes from discrimination, including bullying, physical assault, and suicide. Join us by engaging in meaningful dialogue about best practices for gender diverse kids to improve quality of life, reduce mental health disparities, and most importantly, help the most historically marginalized kids achieve their optimal health.