Rare Kidney Disease Foundation

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Rare Kidney Disease Foundation

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RKDF is a patient-focused nonprofit organization, resolute in HALTING the devastating impacts of ADTKD across generations by supporting physician-researchers in their quest to find a treatment and, ultimately, a cure.

11/18/2025

👇 We want to hear YOUR story! 👇

Tell us in the comments:

• Who was your guiding light? Was it a dedicated family member, an incredible friend, a compassionate doctor, a wise nurse, a supportive social worker, a fellow patient, or someone else entirely?

• How did they help you? Share a specific memory or action that made a difference.

• Tag them if you can! Let's give them the appreciation they truly deserve.

Your story is powerful, and sharing it does so much more than just leave a comment. By highlighting your support system, you provide hope and show others in the RKDF community that help is available and that they don't have to face this alone. Let's create a chain of positivity and recognition!

11/13/2025

Did you know that the Rare Kidney Disease Foundation was able to speak to hundreds of attendees at the American Society of Nephrology (ASN) Kidney Week last week? 👥

And did you know many of our most crucial interactions included attendees—clinicians and researchers—who did not even know what Autosomal Dominant Tubulointerstitial Kidney Disease (ADTKD) was?

📣 This is precisely why we attend these major conferences! Our mission at ASN was to spread vital awareness of ADTKD, in the hopes that:

• More diagnoses can happen swiftly for individuals and families currently left wondering why their kidneys are failing.

• More research can be mobilized to find effective treatments in the future.

Every conversation at ASN was a step toward closing the knowledge gap and ensuring that ADTKD is recognized earlier. We showed the nephrology community that ADTKD, while rare, has a powerful voice and need to be front-of-mind. 💪

Lastly, we truly would not have been able to attend this critical conference and make this essential impact in the nephrology world without the incredible contributions of our supporters and donors. Your generosity makes awareness, education, and change possible! 💚

11/10/2025

🎉 ASN Conference Success! 🎉

What an incredible week at the American Society of Nephrology Conference! The entire Rare Kidney Disease Foundation team had a truly beneficial time connecting with leaders and innovators in the field. Our attendance was a huge success, especially as we were able to advance awareness of ADTKD with nephrologists and other kidney-centered organizations.

A special thank you to our friends at . It was fantastic seeing you all and connecting at our booth. We deeply value the relationship we have built with your organization. Thanks for stopping by!

11/07/2025

Did you see today’s feature in USA Today Kidney Health Magazine? The Rare Kidney Disease Foundation (RKDF) emphasizes that awareness saves time, and diagnosis changes lives, especially for those with ADTKD.
If you have a family history of kidney disease, genetic testing is essential. The RKDF is working to halt ADTKD’s impact and needs your help to raise awareness and populate the International ADTKD Registry!
Get the facts and learn how to join the supportive community: https://www.futureofpersonalhealth.com/kidney-and-liver/genetic-testing-critical-for-detection-management-and-treatment-of-genetic-kidney-diseases/

11/04/2025

🛑 The 'STOP' sign is our mandate: HALT the progression of devastating rare kidney diseases like Autosomal Dominant Tubulointerstitial Kidney Disease (ADTKD).

ADTKD affects thousands of families, often leading to kidney failure. Our organization is directly partnering with top researchers to find a treatment:

Targeting the Root Cause: We support scientists studying the specific gene mutations to develop a deeper understanding and better diagnostic tools.

Building the Infrastructure: We are vital partners in the ADTKD Patient Registry, building the critical data repository needed to accelerate scientific discovery and prepare for future studies.

Driving Access to Testing: We work to increase awareness and access so more families at risk can get genetic testing, leading to earlier diagnosis and management.

📣 Call to Action for YOU:

You can help us turn this research into a treatment! SHARE this post to raise awareness, LEARN MORE about genetic testing, and DONATE to fund this critical work. Find more information at our website: https://rarekidneydisease.org/

10/31/2025

Huge shout-out to actor Jesse Eisenberg for his powerful act in providing a living kidney donation, scheduled for later this year, as shared by the Today Show! 👏

For the chronic kidney disease community, especially those facing conditions like ADTKD (Autosomal Dominant Tubulointerstial Kidney Disease) that lead to kidney failure, a transplant is a lifeline.
Stories like Jesse’s are crucial because they normalize the conversation around donation.

We hope this act inspires you to learn more about living donation and how you can help save a life. Thank you, Jesse!

10/30/2025

We see you. We know it’s been a long and confusing journey to get here. But now there’s hope! The diagnosis isn't the end—it's the beginning of a powerful new path.

The Rare Kidney Disease Foundation is here for what’s next.

There are new treatments on the horizon for inherited kidney diseases like ADTKD, and you can be part of finding a treatment.

Your Next Steps After Diagnosis:
☑️ Talk to your genetic counselor to fully understand your mutation.

☑️ Consider joining a patient registry. This is one of the most vital ways you can help accelerate research toward a cure!

☑️ Create your family pedigree to track the disease through generations.

☑️ Talk to your family about their kidney health and if they want to get tested.

The more informed you are, the more power you have to manage your health and help your community.

➡️ Click the link below to find resources and connect with our ADTKD community today.

https://rarekidney.org/contact-us

10/28/2025

When Evan Leong learned he had the rare ADTKD-UMOD, his greatest concern was passing it on to his children. But that worry didn't paralyze him—it ignited an incredible drive!

He and his wife are channeling their energy into research and volunteerism to build solutions for their children. As Evan says, he is "another in a long family legacy of facing this battle with strength," and is committed to showing the world how to live well with ADTKD.

If you need a dose of real-life courage, click to read this inspiring patient story of a family choosing hope over fear.

➡️ https://rarekidney.org/blog/c/patient-stories/b/living-well-with-adtkd

10/21/2025

Our international summit highlighted a topic critical to the Rare Kidney Disease Foundation (RKDF) community: Obtaining Genetic Testing. 🧬

This short video explains why genetic testing is the gold standard for diagnosing rare kidney diseases like Autosomal Dominant Tubulointerstitial Kidney Disease (ADTKD).

For someone with suspected ADTKD, genetic testing is more than just a diagnosis—it's a path to clarity:

Definitive Diagnosis: ADTKD can be easily missed or misdiagnosed as other forms of CKD. A genetic test offers the most definitive answer, often negating the need for an invasive kidney biopsy.

Personalized Management: Knowing the specific gene mutation (e.g., ADTKD-UMOD or ADTKD-MUC1) guides your doctor toward the most appropriate care, management, and monitoring plan.

Family Planning & Screening: Since ADTKD is an inherited condition, a positive result enables cascade testing to identify family members (including potential living kidney donors) who may be at risk or benefit from early intervention like gout prevention.

RKDF is here to connect you with the resources to pursue genetic testing and find answers.

👉 Listen to the full explanation and learn about next steps: https://youtu.be/8kRFYie1is0

10/14/2025

BE THE CHANGE: Volunteer with the Rare Kidney Disease Foundation! 💪

We need YOU to join our team! Whether you are someone living with ADTKD, a family member or friend who loves a member with ADTKD, or simply someone with a strong passion for our mission, there's a place for you to make a real difference. 💚

Together we can pave the way for more awareness, support, and research! 🧬

Learn how to volunteer today: https://rarekidney.org/contact-us

10/07/2025

The inspiring journey of physician-scientist Dr. Anna Greka and her groundbreaking work on Autosomal Dominant Tubulointerstitial Kidney Disease (ADTKD) is a story you won't want to miss! 🧬🔬

Dr. Greka is a true "molecular sleuth," taking on the some of the world's rare diseases. Her curiosity-driven research, inspired by the patients she treats, has led to extraordinary advances in understanding ADTKD, specifically the MUC-1 mutation.

She and her team at the Broad Institute have a powerful story of solving a decades-old medical mystery to identify the genetic cause of ADTKD-MUC1 and then translating that discovery into a potential treatment. This is more than just science; it's a testament to hope and the relentless pursuit of a treatment for ADTKD.

For a full account of this medical breakthrough and to hear Dr. Greka's own words on the power of combining patient care with cutting-edge research, be sure to watch her detailed video on "Molecular Sleuthing for Rare Diseases."

What it here: https://www.youtube.com/watch?v=LOtDmHeN3TA 👇

10/06/2025

Exciting weekend at the AAKP National Meeting Conference in Fort Worth, Texas!

We had an incredibly productive and insightful time attending AAKP's national conference. It was a fantastic opportunity to connect with fellow advocates, patients, and healthcare professionals, all dedicated to improving the lives of those affected by kidney disease.

We are so grateful to AAKP for hosting such a well-organized and informative event. The sessions and discussions were invaluable, providing us with new perspectives, critical updates, and renewed inspiration to continue our mission. We learned so much that will directly benefit our efforts at RKDF!

Thank you, American Association of Kidney Patients, for your tireless work and for bringing this vital community together. We left feeling energized and more equipped to support the rare kidney disease community. 💪

Stay tuned for more updates from RKDF, and here are some photos from the event! 📸

Address

Holladay, UT
84117

Website

http://rarekidney.org/

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