This is what Grok AI says about aHUS alliance efforts have been to promote Rare Disease Day 2025 awreness,
1. **Video Project Launch**: The aHUS Alliance Global Action team launched a community video project titled “More than You Can Imagine,” aligning with the Rare Disease Day 2025 theme. This project features contributions from aHUS patients and family caregivers across 12 countries, showcasing their experiences and needs. The video was released today, highlighting the global impact of atypical hemolytic uremic syndrome (aHUS) and raising awareness about this ultra-rare condition.
2. **Updated Research Library**: They have added over three dozen recent aHUS-related publications to their ‘Virtual Library.’ These resources are organized by topics such as thrombotic microangiopathy (TMA), pregnancy, complement system, and transplant, providing valuable information for patients, caregivers, and researchers. Highlights from this update were shared in anticipation of Rare Disease Day to emphasize ongoing research efforts.
3. **Promotion of the Global Patients’ Research Agenda**: The aHUS Alliance has continued to advocate for their Global Patients’ Research Agenda, which includes 15 key questions developed by patients and caregivers. This initiative, originally launched on Rare Disease Day 2019, was highlighted again for 2025 to encourage researchers and clinicians to prioritize patient-centered research topics, reflecting the real-world challenges faced by the aHUS community.
4. **Social Media Engagement and Awareness**: Leading up to and on Rare Disease Day, the aHUS Alliance has been active on platforms like X, sharing updates about their activities, including the video project and research library. They’ve posted image galleries and infographics to illustrate the rarity of aHUS (affecting 2 to 9 people per million) and its broader context within the 300 million people globally living with rare diseases.
These efforts demonstrate the aHUS Alliance’s commitment to raising awareness, amplifying patient voices, and supporting research for Rare Disease Day 2025. Their work focuses on connecting the global aHUS community while educating the public and medical professionals about this rare disease.
Article No. 712
