Rare Doesn’t Mean Forgotten
Urgency Sparks Action; Action Sparks Hope
“I think sometimes hearing the words ‘rare disease’ belies a sense of urgency, when urgency is exactly what’s needed,” says NICHQ President and CEO Scott D. Berns, MD, MPH, FAAP. “While each disease is rare, together they affect nearly one in 10 people. And these individuals and their families deserve urgent interest from all of us working to improve health outcomes.”
Read Berns’ full article where he shares why he is personally and professionally invested in helping children with rare diseases reach their fullest health potential.
Sickle Cell Disease as a Map for Change
Innovations in treatment and drug therapies have significantly improved health outcomes for those battling sickle cell disease, a rare blood disorder that causes excruciating pain episodes and disproportionately affects African American and Black individuals. These successes illustrate what's possible for rare disease care improvement. Below we share two strategies for change.
- Find out how the Health Belief Model can help more patients get the care they need by eliminating missed appointments, and join a network of patient, providers and advocates working to increase appointment attendance. Learn more.
- Learn how Telementoring is increasing knowledgeable providers so that more sickle cell disease patients can receive expert care, regardless of where they live.
- Find strategies to better support young adults when transitioning to adult care, ultimately reducing complications and mortality rates during this high-risk period.
In recognition of National Sickle Cell Disease Awareness Month, help us share these articles and resources widely. Click the social icons on each article to spread the word.
Tap a Powerful Partnership
Families affected by rare diseases are irreplaceable partners for systems improvement. More than anyone, they understand the difficulty of navigating complex health systems while trying to help children reach their optimal health.
Looking for examples that inspire family partnership? Read how a mother partner’s insight changed a quality improvement project and resulted in sustainable change; or learn about a mother who became an advocate for the sickle cell disease community, raising needed awareness to inspire improvement.
Be a Children's Health Change Agent
Like you, we have a shared passion for improving the health of every child in every state across the country. Join us in our mission. Take action to make a difference for children now and in the decades to come:
- Donate. Give a gift that supports NICHQ’s initiatives that touch millions of children’s lives. Every dollar raised benefits the health and well-being of children.
- Sign up. Join our network of thousands of other subscribers. We deliver resources, articles and webinars right to your inbox so that we can drive change in children’s health outcomes together.
- Spread the word about children’s health initiatives, advocacy and the stories that inspire systems-level change. Share our monthly message on Facebook and Twitter.
What People Are Saying
Our work to improve children’s vision and eye health in the U.S. has always centered on big ideas and massive systems shifts, thus we found the process of continuous quality improvement to be an exciting new way to tackle the challenges we face in our work.
NICHQ has really supported our work by formalizing a process to do PDSA cycles, report and track how our progress is doing. As a data person, CoLab has been really instrumental in terms of gathering the data and tracking it over time.
I am so impressed by the processes that the NICHQ staff use so well to enable teams in many different locations to learn and share, to practice QI processes, to support and inspire each other. NICHQ helps busy people find time to do important and difficult work that improves clinical practice, and to sustain the changes they themselves developed. I’m lucky to have been connected to NICHQ!
For me, NICHQ is uniquely positioned to support complex, system-based efforts to improve child health and healthcare, locally and on a national scale. NICHQ helped my teams succeed by supporting collaboration, information management, and continuous learning. With NICHQ's help, the whole of our work was much greater than the sum of each of our individual efforts!
It has been an honor to work with NICHQ as a Parent Faculty member. I admire how NICHQ continues to center their work around the people directly impacted by it: families and children. They actively work to include these voices throughout project implementation, ensuring that policies remain grounded in patient experiences and feedback. The expertise and professionalism of NICHQ staff has meant that I always feel supported, and confident that all stake holders are included in the process.
I feel like I am always learning when I am exposed to NICHQ. I am actually really going to miss it when this collaborative ends!
Working with NICHQ, I have been able to assist communities all over New York State with their breastfeeding care efforts. The NICHQ staff is experienced, organized and thorough, ensuring each interpersonal interaction is maximally engaging and productive. Because of the way change efforts are organized, I find myself learning new procedural and educational techniques, and even more about my own field! Thanks to NICHQ for including me on this interesting ride.
I was very hesitant about quality improvement in the beginning but NICHQ reformed me. I have been working within our region and our state with health partners for years, but we have made more progress working with NICHQ through your learning process and collaboration than with any other group.
I'm passionate about early identification and connection to services and supports for children and families because we know acting early makes a difference. When I learned that the ECCS CoIIN leverages collaboration, innovation and quality improvement methods to improve early childhood systems, I was thrilled to get involved. There is a great focus on parent engagement too, so I was really happy to join the team and be a part of this great work.
