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Join Us: Direct Connect Meetings

ASF invites you to join us for 60-minute, staff- and volunteer-moderated Direct Connect virtual meetings (held over Zoom) that provide important opportunities for patients and family members to meet others facing similar life circumstances, ask questions, identify areas of need, and help lay groundwork for future educational content.

Topics will vary by month. Unless indicated otherwise, Direct Connect meetings are open to Alport patients and family members ages 18+. ASF plans on hosting Direct Connect meetings designed just for teens as well, which will also be posted on this page. All meetings are free but require pre-registration to attend. Note: To encourage open conversation, Direct Connect events are not recorded.

Have an idea for an upcoming Direct Connect session? Email ASF Staff!



Upcoming Virtual Discussions


Wednesday, May 29th at 4pm PT / 7pm ET: Navigating Care as Women with Alport Syndromeย 

Click Here to Register


To receive our monthly e-newsletter and be the first to know about future discussions, register as a free member of the ASF Community.






Archive of Prior Direct Connect Events/Topics


April 2024: Dialysis and Transplant Experiences

March 2024: Research Opportunities for Alport Patients

February 2024: Alport Patient Journeys

October 2023: Alport Connect 2023 In-Person Event (San Diego)

September 2023: Accommodations and Considerations for Grades K-12

July 2023: Alport Patient Care Away from Home

May 2023: Anxiety Surrounding Alport Treatment Medications

April 2023: Kidney Transplant

March 2023: Food Choices for Optimal Kidney Health

March 2023: Ways to Get Involved with the Alport Community

February 2023: New Members of the Alport Syndrome Foundation Community

November 2022: Alport Males – Sharing Your Experiences and Questions

October 2022: Identifying and Addressing Mental Health Needs in Alport Patients

September 2022: Parents of School Children Enrolled in Grades K-12

August 2022: Parents of Elementary/Middle School Patients; Parents of Teen/Young Adult Patients; Alport Females – Overcoming Challenges in Disease Management; Alport Males – Sharing Your Experiences and Questions

July 2022: Building a Support Network At All Stages of Disease

June 2022: Let’s Talk Alport Medications

May 2022: Coping with Alport syndrome for family and loved ones

April 2022: What to Know About Kidney Transplant: Before and After

March 2022: Let’s Talk Food: Recipes, Substitutes, & Successful Meals

February 2022: Coping with COVID Lifestyle Changes + Effectively communicating Alport needs with doctors, employers, schools, and more

January 2022: Ages 35-50