The Atypical HUS Foundation

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The Atypical HUS Foundation Official page of
The Atypical HUS Foundation. We are here to support and provide resources for patients and their families.

The Atypical HUS Foundation is a 501c3 nonprofit organization dedicated to providing information and support to aHUS patients, caregivers, and families affected by this ultra-rare disease. As the voice of aHUS patients in America, and leaders in world aHUS advocacy efforts, we connect all those interested in aHUS issues and research to resources, meaningful dialogue, and collaborative opportunities.

We have a few limited edition Halloween shirts left from the Conference!! There aren’t many, so if you are interested co...
10/07/2026

We have a few limited edition Halloween shirts left from the Conference!! There aren’t many, so if you are interested comment below with your size!! Alyssa will reach out! They are $25 + $5 shipping.

09/26/2026

We're excited to share Adam Keen's aHUS caregiver story. 💪
Adam opens up about his journey, challenges of caregiving, and moments that have shaped his and his partner's experience.
Thank you Adam, for sharing your journey. 🧡

After, we’re happy to have Dr. Nattawat Klomjit back with us again! 💙

This time, he’s talking about “All Things aHUS”—covering important updates, questions, and topics that matter to our aHUS community.
Join us and tune in! 📺

09/26/2026

🧡 Every patient story matters. 💙

Today we're sharing Reagan Stewart's story - a personal look at her journey living with aHUS and the experiences that have shaped it.

🧬 After, let’s talk aHUS & genetics! 🧬

Join us with Dr. Nattawat Klomjit for a friendly conversation about aHUS, genetics, and what it all means for patients and families.

09/25/2026

🧡💙 Caregivers, this one’s for you!

We’re excited to hear from Ronda Thorington, MA, LPC, as she shares some thoughts on the unique challenges of caring for someone living with aHUS — and why taking care of yourself matters, too.

We hope you’ll join us for this important conversation and feel a little more supported along the way. 🧡💙

09/25/2026

🧡💙 aHUS Potpourri is LIVE with Dr. Dixon!

We'll be covering a variety of current and timely aHUS topics, with plenty of info and discussion relevant to our community.

Join us LIVE to see what's on the agenda! 👀🧡💙

09/25/2026

🎤 aHUS Q&A! 🎤

Join us as Dr. Dixon and Dr. Klomjit answer questions, share insights, and dive into important topics surrounding aHUS! 🧡💙

09/25/2026

🎓🩸Time for a little aHUS Bootcamp!

Dr. Dixon is here to break it all down and give us a great refresher on aHUS - because there's always something new to learn!

☕️ Grab your coffee, settle in, and let's get our aHUS knowledge on! 🧡💙

09/24/2026

🎥 We're LIVE from Orlando! 🌴

Dave Deffenbaugh, President & Chair, is kicking off the aHUS 2026 Family Conference in Orlando, FL - bringing the aHUS community together for a weekend of connection, education, and hope.

Not here in person? Join us LIVE all weekend! We'll be streaming all the fun and we'd love to have you with us! 🧡💙

The aHUS Foundation 2026 Family Conference is finally here, and on aHUS Awareness Day!! 💙🧡
09/24/2026

The aHUS Foundation 2026 Family Conference is finally here, and on aHUS Awareness Day!! 💙🧡


September 24th is aHUS Awareness Day. 💙Take a moment today to tell someone what aHUS is, share your story, and help some...
09/24/2026

September 24th is aHUS Awareness Day. 💙

Take a moment today to tell someone what aHUS is, share your story, and help someone else understand what living with a rare disease can look like.

We are incredibly grateful that aHUS has treatments when fewer than 5% of rare diseases do. But our work is far from over. We still lose patients, and access to treatment remains difficult for too many families around the world. Awareness still, and always, matters.

This month, the aHUS Foundation sent free Awareness Day pins to more than 400 people around the world. 🌎 If you received one, we’d love to see you wearing it! Share a photo with and tell us what you’re most thankful for today.

And this year is extra special for our community. For the first time, our annual family conference begins on Awareness Day. More than 100 patients and caregivers will come together to learn, reconnect, share their experiences, and celebrate the community that understands what it means to live with aHUS.

Want to help us continue this work? Consider making a donation today to support aHUS patients, families, and awareness efforts around the world. Every gift makes a difference. 💙

https://tinyurl.com/ahusawarenessday

Address

PO Box 775
Penfield, NY
14526

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