Select Page

March 2024 Newsletter

Since the release of our Patient Guide in late 2021, we have seen many changes to the Alport syndrome landscape. Therefore, with the input of members of our Medical Advisory Committee, Emerging Leadership Council, and patients, we are proud to release our updated Patient Guide.

To help patients and caregivers navigate all of the terms and concepts discussed in the Guide, we have also put together an updated and expanded Alport vocabulary terms page on our website.

Whether you’re new to the Alport community, seeking to educate friends and family members, or just want to learn the latest thinking on all things Alport syndrome, this guide is for you.

Whether you’re new to the Alport community, seeking to educate friends and family members, or just want to learn the latest thinking on all things Alport syndrome, this guide is for you.

Don’t forget: Through our mobile app, ASF Community, numerous educational resources are quickly accessible to all patients/caregivers wherever they happen to be (including a doctor’s office).

A Hopeful Message from Champion Gymnast

In honor of World Kidney Day and Alport Awareness Month, ASF is grateful to share a personal message to our community from Aly Raisman, champion gymnast and kidney health advocate:

Alport syndrome has affected my family for multiple generations and I’m passionate about raising more awareness for better treatment options. Through our own experiences, my family has learned the importance of patients’ knowledge and understanding of this disease. I believe it’s essential for patients to feel empowered to speak up and ask questions to learn more.

ASF has shared with us that we each have unique genetic profiles influencing the progression of our symptoms and genetic testing and education are crucial tools for doctors to best treat Alport patients. I’m so grateful for ASF’s efforts in advancing new research, education, and supporting this community. Working together to help these efforts will hopefully help improve and save the lives of patients, friends, and families impacted by Alport syndrome. 

 Why Join the ASF Alport Patient Registry?

In this 90-second video, pediatric nephrologist Dr. Bradley Warady of our Medical Advisory Committee explains why enrolling in the ASF Alport Patient Registry is a simple yet critical step that patients can take to advance research in our rare disease.

Click “CC” to activate closed captioning.

Additionally, we have updated our “Get Ready” guide to help patients and/or parents of patients smoothly navigate the enrollment and data input process.

We would like to extend heartfelt gratitude to the 350+ current enrollees in the registry for helping to advance Alport research.

Ask the Expert: Medications in Pediatric Alport syndrome

In the new video below, ASF Medical Advisory Committee member Dr. Caitlin Carter answers patient-submitted questions regarding medications for pre- and post-transplant pediatric Alport syndrome patients. Topics include common side effects, dosing considerations, switching medications, clinical trials, and more.

Click “CC” to activate closed captioning.

Alport Connect 2024 Update

Free tickets for Alport Connect 2024 will be made available on Thursday, March 21st. Be sure to check your email inbox, the ASF Website, and/or our social media channels that day.

We hope you can join us in Denver, Colorado on July 27 & 28th.

All tickets are free for individuals living with Alport syndrome ages 12+ and their family members but space is limited. Partial travel reimbursement opportunities will be provided on a first come, first served basis for eligible ticket holders until all available funds are claimed.

Regional ASF Messaging

If you have changed your state of residence since becoming a free member of ASF, please email us so we can update our records and your communication preferences. You are also more than welcome to reach out and check with us to confirm your information is accurate.

Thankfully, opportunities for our community to participate in research, clinical trials, and patient-focused events are growing. It’s important that ASF is able to inform you of opportunities that are located geographically close to you by state (and city, if possible).

Additionally, if you prefer to receive messages from ASF at a different email address, simply let us know.

View our Newsletters and Announcements page for an archive of prior communications.