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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.
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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.