National Pediatric Transplant Awareness Week
April 18-24 is National Pediatric Transplant Awareness Week – a timely reason to focus on children with complex health care needs. Hosted by Donate Life America (DLA), the awareness week is working to end the pediatric transplant waiting list. There are currently 1,900 children under the age of 18 waiting for a variety of organ transplants. More than 500 of them are younger than 5. Although many of the conditions necessitating transplant can occur as early as infancy, the needs per age group vary. Most children ages 6-10 are waiting for a kidney transplant.
Atypical Hemolytic Uremic Syndrome (aHUS) is a very rare, chronic, and life-threatening genetic condition that affects children and adults, often leading to an urgent need for a kidney transplant. For people with aHUS, the increased risk for blood clotting can cause damage to organs, leading to heart attack, stroke, and kidney failure. According to the aHUS Alliance, the impact of aHUS can be serious: The majority of patients progress to end-stage kidney failure within three years of diagnosis. While aHUS patients often have kidney transplants, sadly the disease recurs in 60% of people who have a transplant.
Diagnosing and treating aHUS in children takes the hard work of multiple specialists. An increased understanding of the clinical presentation can assist physicians in early diagnosis. That's why NICHQ is offering a free webinar for our pediatric health care audience.
NICHQ Webinar: Managing aHUS: A Multidisciplinary Team Approach
Hosted in recognition of National Pediatric Transplant Awareness Week (April 18-24), NICHQ invites pediatricians, family physicians, and other health care providers to widen their understanding of the clinical presentation of aHUS, learn more about the background and treatment, and discover how a team approach can successfully manage aHUS.
April 30, 2021 | 12-1 p.m. ET
Participate on Social
Use your social media to advocate for pediatric transplant awareness and the connection to rare diseases like aHUS. We’ve developed an online social media toolkit with graphics, images and sample posts sharing key statistics and facts that illustrate the impact pediatric transplant and rare diseases like aHUS have. Share the toolkit with your colleagues and use it yourself during April 18-24.
Share Your Story
Are you someone living with aHUS or a parent of a child with aHUS? Are you a pediatrician, family physician, or other health care provider with a story about rare disease or pediatric transplant? Sharing your story can help more people learn about rare diseases and why they deserve attention.
Submit your story here and NICHQ will share a collection of them during Pediatric Transplant Awareness Week and on Rare Disease Day.
Sharing Family Stories
Family and patient voices are an important part of quality improvement and increasing health equity. The aHUS Foundation shares the stories of Brooke, who experienced symptoms at 3 months old, and Austyn, whose parents grew concerned after symptoms presented when she was 13 months old. Providers can also learn about the impact of extended diagnosis from Daphne, who first experienced symptoms during the last week of her pregnancy.
Ideas for Improvement
Are you a health professional or advocate wondering what more you can do? Explore these resources to spark improvement.
- Pediatrics Supporting Parents: This initiative's ultimate vision is to help ensure that all children from birth to age 3 receive the supports they need to achieve kindergarten readiness and positive life outcomes. Pediatricians can make the most of these early years by fostering interactions between parents and children that support healthy social and emotional growth.
- Pediatricians Partnering with Families: Three Ideas for Effective Partnerships
This insight explores three concrete strategies for pediatric health professionals to engage families in trusting and sustainable partnerships.
NICHQ’s Pediatric Transplant Awareness Week campaign is supported by Alexion Pharmaceuticals. Alexion shares NICHQ’s commitment to improving health outcomes for children born with rare diseases, so that all children can reach their optimal health.