Alport Syndrome Foundation of USA

02/27/2026

08/30/2024

Our next Direct Connect, open to patients, family members. and caregivers ages 18+, will be held on Thursday, September 5th at 4:30pm PT / 5:30pm MT / 6:30pm CT / 7:30pm ET.

Join us for a 60-minute virtual chat focused on "Alport Care Away From Home."

To encourage open conversation, Direct Connect events are live and not recorded.

Learn more about this discussion and register to join us at the link below.

Join ASF for a 60-minute Direct Connect Session on: Thursday, September 5th at 4:30pm PT / 5:30pm MT / 6:30pm CT / 7:30pm ET Whether you or your child are about to head off to school or you've just completed a major move, establishing medical care in a new place can be daunting. Connect with fellow....

08/05/2024

Applications for the 2024 Paul Silver Enrichment Award are now open to U.S Alport patients ages 18-24.

Award funding can be used to support education, complete a project, or pursue an activity that will enhance the applicant’s life.

Awards of up to $3,000 are offered by the Selection Committee to individual applicants who best meet the evaluation criteria. The application deadline is October 25th.

Learn more about the award and apply today by clicking the link below.

The Paul Silver Enrichment Award was created in memory of Paul Silver, an Alport syndrome patient. Paul was a film and music editor in Hollywood who passed away in 2004 at the age of 38.

07/27/2024

Drs. Simon and Carter of ASF’s Medical Advisory Committee discuss standard of care at !

04/23/2024

As a reminder, our next Direct Connect is later today (Tuesday, April 23rd) at:

4pm PT / 5pm MT / 6pm CT / 7pm ET

Join ASF Staff, Emerging Leadership Council members, and dialysis and transplant patients for an informal discussion about end-stage kidney disease and treatment options!

Free registration: https://us06web.zoom.us/meeting/register/tZYrduqprDwpHtVrIznW3ns0lz3vipKO1izA #/registration

03/01/2024

In honor of Alport Awareness Month, we will be hosting a 60-minute Direct Connect conversation on March 5th focused on ways patients can participate in Alport syndrome research. ASF’s Research Director, B. André Weinstock, PhD, MSAS, will be present to answer attendee inquiries.

Research Opportunities for Alport Patients
Tuesday, March 5, 2024
4:00pm Pacific / 7:00pm Eastern

To encourage open conversation, Direct Connect events are live and not recorded.

Free, advanced registration is required: https://us06web.zoom.us/meeting/register/tZ0pcOyuqD0qH9zlutQNtGu9e5rhSn1tNjBd #/registration

02/29/2024

As a , is commonly misdiagnosed. Genetic testing is a powerful tool for accurate diagnosis, which can unlock access to treatments, clinical trial opportunities, and ways to connect with the larger community of patients and families. For more information, visit alportsyndrome.org.

02/29/2024

🚨 IT'S OFFICIALLY RARE DISEASE DAY ACROSS THE GLOBE 🚨

Join us in marking Rare Disease Day 2024 now that it's finally here! Let's unite in solidarity with the millions worldwide living with rare diseases. 🌍 Spread awareness, share stories, and show support for them.

Together, we can make a lasting impact and shine a light on these often overlooked!

Let's make today count by raising awareness and advocating for those who need it most. Every voice matters in the fight for understanding and support.

Visit our website to find out more:https://www.rarediseaseday.org/

02/06/2024

ASF’s patient and family meeting, Alport Connect, is returning in person in 2024. We wanted to let our community know the dates and location as soon as possible so you can plan to join us in Colorado this summer!

Additional details about this year’s event, including the venue, lodging options, and ticket reservations, will be made available in the coming weeks.

We have prepared a 2-minute, closed-captioned recap video of last year’s Alport Connect event so you can see what it meant for so many patients and families to be together in person.

Watch the video: https://youtu.be/NK6e-qCnrpU

10/29/2023

Alport Connect 2023 was our largest in-person gathering to date! We are grateful to share that 100% of event survey respondents “would recommend this Alport Connect experience to other patients and families.” Thank you to our attendees, event sponsors, guest speakers, and volunteers for making this memorable event possible.

Alport Connect will once again return in person in 2024. Additional details will be shared once our location and dates are finalized.

Our two keynote addresses concerning research updates and managing aspects of Alport care were professionally recorded. We hope to share the finalized, closed-captioned recordings on our YouTube channel in the coming weeks.

03/24/2023

ASF's annual patient and family meeting, Alport Connect, is returning in person for the first time in 3 years.

Alport Connect 2023 will not include virtual participation or be recorded

Saturday, October 7th is a free ticketed event for indoor programming at the University of San Diego with three separate, simultaneous programs: Adults (ages 18+), Teens (ages 13-18), and Kids (ages 7-12). Note: The Teens program and Kids program are only for individuals with Alport syndrome. As space is limited, we cannot accommodate unaffected siblings or those under the age of 7 at this time.

Sunday, October 8th does not require a ticket and will be held at a local beach.

Learn more about our major gathering and secure your Saturday ticket(s) today: https://www.eventbrite.com/e/alport-connect-2023-san-diego-ca-in-person-only-event-tickets-551799415907

02/28/2023

Today, we celebrate .

is just one of the 7,000+ rare diseases that affect a combined 300 million individuals worldwide.

All Alport patients and families are encouraged to advocate for legislation which helps directly address issues experienced by rare disease patients.

Click the link below to customize a quick message to members of Congress and share this post with your network to maximize our collective voice!

As a rare disease advocate you are a very important part of the legislative process. You can make a difference by making your voice heard by your Senators and Representatives. Please click on the action alerts below and contact your Members of Congress.