Each year, the last day of February is dedicated to raising awareness about rare diseases, defined as a condition that affects fewer than 200,000 people. Despite the fact that many rare diseases go undiagnosed and no cure exists for a majority of rare diseases, progress is being made to ensure that children and families are receiving the individualized support and care needed to reach their optimal health. Keep scrolling to learn how you can participate in Rare Disease Day with NICHQ!
Celebrate Rare Disease Day
Improve Care for Patients
Improving Transitions in Care Saves Lives: These strategies can guide transition care for young adults with sickle cell disease to improve health outcomes throughout adulthood.
Explore HRSA’s New Newborn Screening Information Center: Designed to increase awareness, knowledge, and understanding of newborn screening and genetic conditions.
Continuing Sickle Cell Disease Care during the COVID-19 Pandemic: People with rare diseases, such as sickle cell disease, have been more vulnerable to the COVID-19 impact. Here's how providers and advocates have remained nimble to ensure that comprehensive and consistent care is maintained throughout the pandemic and beyond.
NICHQ Initiatives Focused on Rare Diseases
Rare As One Network Workstream Facilitation: NICHQ is supporting the launch of patient-centered research networks by facilitating topical workstreams with grantees from the Rare As One Project (RAO).