Lisa Bonebrake of Alport Syndrome Foundation on genetic testing, patient-powered research, and the push to build a clearer path toward approved treatments
Incredible discussion Lisa and Tim! Looking forward to attending Alport Connect this July & will absolutely be bringing my genetic test results with me to further discuss. I was diagnosed, by biopsy, with X Linked Alport at 18 months old.
Thanks Taiylor! I really appreciate you listening and sharing. Please let us know how Alport Connect goes, would love to hear any updates or takeaways from the meeting.
![Signals From [Space]](https://substackcdn.com/image/fetch/$s_!IXc-!,w_40,h_40,c_fill,f_auto,q_auto:good,fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F9f7142a0-6602-495d-ab65-0e4c98cc67d4_450x450.png)
![Signals From [Space]](https://substackcdn.com/image/fetch/$s_!IXc-!,w_120,h_120,c_fill,f_webp,q_auto:good,fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F9f7142a0-6602-495d-ab65-0e4c98cc67d4_450x450.png)
![Signals From [Space]](https://substackcdn.com/image/fetch/$s_!lBsj!,e_trim:10:white/e_trim:10:transparent/h_48,c_limit,f_auto,q_auto:good,fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F0e0f61bc-e3f5-4f03-9c6e-5ca5da1fa095_1848x352.png)
Incredible discussion Lisa and Tim! Looking forward to attending Alport Connect this July & will absolutely be bringing my genetic test results with me to further discuss. I was diagnosed, by biopsy, with X Linked Alport at 18 months old.
Thanks Taiylor! I really appreciate you listening and sharing. Please let us know how Alport Connect goes, would love to hear any updates or takeaways from the meeting.