The Atypical HUS Foundation

06/01/2026

Join us for the Coca Strong 5K/10K on Sunday, August 2, 2026 at Rockland Lake State Park! This inspiring event was created by a patient to raise awareness and support for those affected by aHUS, a rare disease that impacts families in big ways. Every step helps shine a light on this important cause, and we’d love for our community to get involved, whether by running, walking, sponsoring, or cheering from the sidelines.

Together, we can bring hope, awareness, and support to families who need it most. 💙

05/28/2026

This survey is closing June 1st! Please consider taking the time to complete and help with research for women with aHUS.

05/20/2026

This is your last chance to register for the aHUS Foundation 2026 Conference
Only 3 Rooms Remaining

Join the aHUS Foundation for the 2026 aHUS Family Conference at the beautiful Drury Plaza Hotel Orlando - Disney Springs Area, an Official Walt Disney World Hotel with transportation to all Disney parks and attractions. From Thursday evening, September 24 through Saturday evening, September 26, families affected by aHUS will come together for a weekend filled with education, support, friendship, and fun. Attendees will have the opportunity to learn from leading physicians and experts, participate in interactive sessions and discussions, and connect with other patients and caregivers who truly understand the challenges of living with aHUS.

https://aHUSconference2026.eventbrite.com

05/18/2026

REGISTRATION IS OPEN AND FILLING UP FAST!

https://aHUSconference2026.eventbrite.com

05/14/2026

For our first time attendees, Time is of the essence!!

✨ Registration is open for FIRST TIME ATTENDEES for the 2026 aHUS Foundation Family Conference! ✨

Join us September 24–27, 2026 in Disney World, Florida for a special weekend of education, connection, support, and community for individuals and families affected by aHUS. 💙

See the graphics below for full conference details and register here:

https://aHUSconference2026.eventbrite.com

05/11/2026

✨ Registration is now open for FIRST TIME ATTENDEES for the 2026 aHUS Foundation Family Conference! ✨

Join us September 24–27, 2026 in Disney World, Florida for a special weekend of education, connection, support, and community for individuals and families affected by aHUS. 💙

See the graphics below for full conference details and register here:
https://aHUSconference2026.eventbrite.com

05/08/2026

✨ The 2026 aHUS Foundation Family Conference is coming to Disney World! ✨

Join us September 24–27, 2026 in Lake Buena Vista, Florida for a special weekend of education, support, connection, and community with other aHUS families. 💙

⭐ First-time attendee registration opens May 11
⭐ General registration opens May 18

See graphics below for full conference details! ✨

04/21/2026

We have a quick update to share with our aHUS community 💙

To make things easier and more efficient, we are changing the way we distribute Emergency Room (ER) cards. Moving forward, we recommend ordering ER cards directly through the TMA website.

The process is simple, quick, and completely free of charge, making it easier for everyone to access this important resource when you need it most.

If you have any questions or need help with ordering, please don’t hesitate to reach out. We’re always here for you.

Store › aHUS Patient Card Image 1 of 4 Image 2 of 4 Image 3 of 4 Image 4 of 4 aHUS Patient Card $0.00 Language: Add To Cart Added!

04/01/2026

Researchers are interested in learning about experiences with healthcare related to atypical hemolytic uremic syndrome (aHUS), particularly around pregnancy, family planning, and access to specialized reproductive care.
If you have experience with aHUS, we invite you to take a few minutes to share your perspective in this research survey: https://redcap.link/womenwithaHUS

If you have questions about this study (IRB00546035), please contact Dr. Shruti Chaturvedi at [email protected].

03/24/2026

Love seeing a spotlight put on Rare Diseases!!

https://www.cnbc.com/2026/03/20/how-cnbc-cures-is-bringing-rare-disease-stories-to-a-national-audience.html?utm_campaign=trueanthem&utm_content=main&utm_medium=social&utm_source=facebook&fbclid=IwZnRzaAQv11xleHRuA2FlbQEwAGFkaWQBqzOAihZ8rXNydGMGYXBwX2lkCjY2Mjg1NjgzNzkAAR5EOSPT-UXM96nSxZpcMlXHeIKctJ88qJtTjXCwv3oNXvRSeaffIREeNmn6Tg_aem_utU0swC_VLVKvKC7gIFKog&utm_id=120245030850340093&utm_term=120245030852120093

Two months after its launch, CNBC's rare disease initiative is starting to reach a broader audience.