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Virtual Family Meeting August 1-2, 2020. Join Us!


May 5, 2020 Update:

With patient safety the highest priority, due to the risks of COVID-19, ASF’s Board of Directors, with input from medical professionals, has made the difficult decision to transition the August 1 & 2, 2020 meeting from an in-person event to an ALL virtual one beginning on the same dates.

While ASF Board, staff and volunteers are disappointed not to speak and be with you in person, we are embracing the silver linings a virtual event offers.

Instead of coming to Cleveland, we’re bringing some of Cleveland Clinic’s medical experts to you, as well as experts from other parts of the United States!

For the first-time in ASF’s 13-year history, the annual Family Meeting will be a no-charge event featuring live, interactive broadcasts and pre-recorded content accessible to those who want to learn from, and connect with, experts and each other. It doesn’t matter where you live: find a comfortable spot wherever you are and join us via your desktop, laptop, tablet, or cell phone and prepare for up-to-date information. Relevant, engaging content will be offered for new patients and Family Meeting returnees alike.

-The live, interactive broadcasts will occur on Saturday, August 1st and Sunday, August 2nd (exact times TBD). Live broadcasts will require pre-registration. Pre-recorded educational content (no registration required) for patients and caregivers of all ages will be made available that weekend and in the days following the event. All presentations will include closed captioning.

-Dr. Bradley Warady, of Children’s Mercy Hospitals and Clinics and the University of Missouri (Kansas City), will be joining our live session on Saturday, August 1st. Dr. Warady will share a presentation followed by Q & A on coping with and treating Alport syndrome in pediatric patients. A live presentation and Q & A on “Women and Girls with Alport Syndrome” featuring Dr. Michelle Rheault of the University of Minnesota, plus an OBGYN with expertise in treating women with chronic kidney disease (including Alport syndrome), will be featured on Sunday, August 2nd. Additionally, a live, interactive, multi-person patient panel will allow for direct patient-to-patient connection the weekend of August 1-2.

-Pre-recorded content for August 1-2 is scheduled to include information the 2020 Research Program, Advocacy, KIDNEYCODE, clinical trials, and more. ASF plans to follow-up on some of the pre-recorded topics by offering additional no-charge webinars connecting experts with the patient community.

-By participating in the Virtual Family meeting, you’ll learn the latest information about living with Alport syndrome and have opportunities for live Q and A.

-A Teen-specific virtual meeting will occur separately on different dates. More info will be forthcoming.

-Healthy Happy Kidney Program will offer content for ages 9-12 to view with their parents/guardians.Registrants for our canceled in-person event will have to re-register for the Virtual Meeting.

More information regarding event specifics/registration will be released in the weeks and months ahead. Please check this page regularly for updates, and make sure “[email protected]” is in your list of contacts so that our group email messages reach you.

If you have any questions, please email [email protected].

Thank you to our generous 2020 ACT sponsors:

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