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january 2020
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ALPORT CONNECT 2023 IN-PERSON MEETING
October 7-8, 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 an indoors event at the University of San Diego:
- Saturday’s educational sessions will be held on the campus of the University of San Diego with three separate, simultaneous programs: Adults (ages 18+), Teens (ages 13-18), and Kids (ages 7-12). Note: The Teen and Kids programs 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.
- Learn from leading Alport syndrome adult and pediatric physicians, researchers, genetic counselors, fellow patients, and more.
Sunday, October 8th does not require a ticket and will be held a local beach:
- Bring your entire family for a morning of social interaction featuring beach games, breakfast snacks, and time to make lifelong connections with other patients and families.
Limited travel stipends are available. Stipends will be offered on a first come, first served basis to all Saturday, October 7th Adult Patient/Family Member Program (18+), Teen Program (Patients ages 13-18), and Kids Program participants (Patients ages 7-12). During checkout, eligible ticket holders can indicate their interest in this offer and will receive a follow up email to confirm the stipend. Click here for our Alport Connect 2023 Travel Stipend Policy.
Thank you to our Alport Connect 2023 sponsors:
ALPORT CONNECT 2022 MEETING
August 6-7, 2022
The all-virtual Alport Connect 2022 event was held Saturday, August 6th and Sunday, August 7th.
Click Here to View the Archived Agenda
The 2022 event was hosted inside the ASF Community app.
Thank you to all those who participated!
Thank you to our Alport Connect 2022 sponsors:
ALPORT CONNECT 2021 MEETING
With safety the utmost priority, ASF announced the return of our virtual-only Alport Connect weekend: Saturday, August 7th and Sunday, August 8th, 2021.
Thank you to all those who attended and participated in the 2021 gathering!
The no-charge, virtual-only event (for those age 18+) was open to the global Alport Community of patients, affected families/caregivers, and medical professionals. Like summer 2020, the event was hosted in the ASF Community app. You can view recordings of the 2021 live weekend panels on our YouTube Channel.
Thank you to our Alport Connect 2021 sponsors:
ALPORT CONNECT 2020 MEETING
Due to COVID-19, the 2020 Alport Connect Meeting was held virtually for the first time via the ASF Community app.
Some examples of what attendees said about the 2020 Virtual Alport Connect Meeting:
“It’s been a weird year but being able to connect virtually to others with Alport syndrome was amazing!”
“Clear, concise information that balanced both the medical aspect of Alport syndrome as well as the emotional aspect.”
“I learned so much! I really enjoyed hearing everyone’s personal experiences. I feel more informed than ever thanks to the doctors’ presentations.”
“I really feel that we took away new and valuable information from each session.”
“I’ve been following the Foundation since the beginning, the event honestly made me feel proud and grateful, it was so well done.”
In-Person Meetings (2010-2019)
Crucial Patient/Caregiver, Physician, & Researcher Gatherings
ASF hopes to safely resume in-person meetings in 2023.
- Adult/Caregivers
- Teens (ages 13-18)
- Healthy Happy Kidney Program (Ages 9-12)
- “Next Level” programming for our returning patients and caregivers
BENEFITS OF ALPORT CONNECT WEEKENDS
- Meeting other families that relate to your experiences
- Understanding the latest research from leading experts
- Learning more about disease management, available resources, and how to self-advocate.
- Socializing and building bonds with families you will reach to for support over time.
“I would recommend attending the Alport Connect meeting because it’s good to know people who are going through the same thing you are. It was a lot of fun and easy to take in information.” — Teen Program Participant, Cleveland 2019
