This Is All New to Me, Now What?
Rest assured, by coming here you’ve already made a powerful step forward!
The aHUS Foundation: Your Compass in the aHUS Journey.
We’ve been there and we understand that the journey you’re embarking on, as someone newly diagnosed with atypical hemolytic uremic syndrome (aHUS), can feel overwhelming and filled with uncertainty. The term “aHUS” may sound intimidating, but we want to assure you that you are not alone. There is a caring community ready to be your steadfast guide through this journey offering education, connection, and hope.
Support, information, and hope come together here to guide you.
If you’ve just been diagnosed or are seeking resources to better understand this condition, you’re not alone! You’ve come to the right place.
What is aHUS?
aHUS is a rare, systemic, and complex condition that affects the kidneys and other vital organs. We know how overwhelming it can be to receive such a diagnosis. Understanding the condition is the first step toward managing it effectively.
How We Support You
Educational Materials
aHUS is such unfamiliar territory for almost everyone. Unless you have it, you’ve probably never heard of it. Outside of medical school, most physicians haven’t. That’s why we provide a wealth of educational materials to help you grasp its fundamentals. These resources empower you with knowledge, from basic explanations to more in-depth insights into the condition.
Global Resources
aHUS is a global concern, and we believe that access to diverse perspectives and resources is vital. Our foundation provides links to aHUS sources from around the world, ensuring that you have access to the latest information and research.
Weekend Conferences
One of the cornerstones of our support system is our weekend conferences, typically offered free of charge once you’re on-site. These events are designed to connect you with others facing aHUS, including patients and caregivers. Here’s what you can expect:
- Patient and Caregiver Breakout Sessions
- Connect with individuals who understand your journey
- Share your experiences and learn from others
- Gain valuable insights into managing aHUS day-to-day
- Find out that what you’re feeling and thinking is not unique to you
- Expert Presentations
- Hear from renowned physicians and aHUS experts
- Impact on your mental health
- Dietary concerns
- Stay updated on the latest advancements in aHUS research and treatments
- Social Time Together
- Develop relationships that will last a lifetime
- Most presentations are videoed for those who cannot attend in person
Social Media Connections
In today’s digital age, connecting with others and staying informed has never been easier. Our foundation provides information on how to join our online communities and social media channels. Here, you can interact with fellow patients, caregivers, and experts in real-time.
The Latest Research
aHUS research is continually evolving. We’ll keep you informed about the most recent breakthroughs and studies in the field, ensuring that you’re always up to date on potential treatments and developments.
Four steps forward!
We know this diagnosis can feel overwhelming. Searching all over the place for the best information can be too. That’s why we’ve curated all of the information and experiences you need right here!
Here are four helpful steps to start your journey with the aHUS Foundation:
Explore Our Website
Take your time to navigate our website. You’ll find a treasure trove of information, resources, and links to get you started.
Join Our Conferences
When the opportunity arises, consider attending one of our weekend conferences. Meeting others who share your experience can be incredibly reassuring.
Connect on Social Media
Join our social media communities to engage with aHUS patients, caregivers, and experts from around the world. It’s a great way to ask questions and find support.
Stay Informed
Regularly check our website for updates on the latest research and developments in the field of aHUS.
At the aHUS Foundation, we are committed to supporting you every step of the way. While aHUS may seem daunting, remember that you are not alone in this journey. Together, we can navigate the challenges, find hope, and work towards a brighter, healthier future. Welcome to our community, we are here for you always!