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July 2022 Newsletter

Join just a few sessions or every moment. Click here to view the Agenda.

Our annual, ALL-VIRTUAL patient meeting is just 2 weeks away! This month’s newsletter is focused on how to register, join, and maximize your Alport Connect 2022 experience. There’s still time to get your free ticket(s) to join us on Saturday, August 6th and Sunday, August 7th.

Alport Connect 2022 is for everyone interested in learning more about Alport syndrome.

Whether you’re recently diagnosed, a patient with years of experience, a parent/caregiver, a clinician, or a researcher, our lineup of ALL NEW content this year has something for everyone.

You’ll have to join us live to learn and connect as event sessions will not be recorded; real-time attendees also quality for cool prizes!

Limited Welcome Packets are available for U.S. registrants and will ship before the event.

How Do I Access the Event?

All ticket holders can join from their device of choice! You can download the ASF Community smartphone app in the Apple and Google Play Stores or join us on its web browser equivalent (for desktops, laptops, tablets, etc.).

We’ll be sure to email full access details to all registrants in late July.

Note: Current ASF Community users are still required to secure tickets to attend our August gathering.

Access Our Event Early to Learn and Win

Event access begins a week early, on Friday, July 29th.

This allows all registrants time to familiarize themselves with the app, view topic-based educational resources, and compete for prizes.

Play our Alport Game (trivia and in-app scavenger hunt) to be entered to win prizes, including a Fitbit Charge 5, ASF-inspired sterling silver jewelry, gift cards, and branded water bottles.

We’ll email you as soon as we go live with event content.

Saturday: Patient Success Stories, Treatment Talk, Researchers

Patients and caregivers share their stories of success and hope. We’ll be chatting live with patients who improved their care through self-advocacy, education, treatment, recent transplant surgery, and more.

Pediatric Nephrologist Dr. Kenneth Lieberman joins adult nephrologists Dr. Anjay Rastogi and Dr. James Simon for a live discussion on the latest “hot topics” in Alport treatment.

The Research + Connection Hall allows all event attendees to interact directly with Alport researchers, representatives from pharmaceutical companies with Alport studies, and genetic testing providers.

Teens and Young Adults moderate their own discussion about elements of the patient journey they wish their families and medical providers better understood.

Sunday: Renal Nutrition, Kids Question Scientists, Social Rooms

Renal nutrition is one of the most talked about aspects of living with kidney disease. When should I start? What are healthy food substitutes? What is potassium and why is it important to monitor? ASF welcomes registered dietitian Rebecca Goodrich to share her approach on addressing individualized patient needs and Alport syndrome nutrition.

Young children living with Alport syndrome will interview current researchers about reasons to be hopeful and life outside the laboratory.

Ticket holders can participate in small discussion rooms with others facing similar life circumstances. We’ll host video chat rooms for males and females of all ages, and for parents of children of varying ages. Separate pre-registration is required (details will be sent to all guests registered for Alport Connect).

Thank you to our Alport Connect 2022 Sponsors to Date: