In this episode of HemeTalks, Alyssa Deffenbaugh and Dr. Toyosi Onwuemene explore the challenges of diagnosing, managing, and living with atypical hemolytic uremic syndrome (aHUS). Listeners will gain insight from a patient advocate and individual living with aHUS, as well as a physician who supports patients through diagnosis and ongoing management. Together, they highlight the importance of advocacy, community, and building a shared understanding between patients and providers. 

Learning Objectives:  

By the end of this episode, listeners will be able to: 

• Describe at least two challenges individuals with aHUS and providers face in achieving accurate diagnosis and effective management. 
• Identify one practical action patients or their support networks can take to advocate for better understanding, diagnosis, or management of aHUS. 
• Describe at least one way community support helps patients, and one way it helps providers navigate aHUS more effectively through shared knowledge or encouragement.  

Clinical Pearls 

• The aHUS Foundation offers essential patient-support resources for individuals living with aHUS, including active Facebook communities and annual conferences that help patients and families stay informed and connected. The American Society of Hematology website also provides valuable educational resources for clinicians seeking information related to rare conditions such as aHUS.
• The annual conferences hosted by the aHUS Foundation create valuable opportunities for patients and caregivers to meet others navigating aHUS, share experiences, and build a shared understanding of life with the condition. 

The aHUS Alliance Action website provides globally sourced educational materials, patient stories, and practical tools that support understanding of aHUS. 

This podcast is part of the Rare Diseases Educational Series, developed by the American Society of Hematology and supported by Alexion.