Calling All Parents of Children with Alport Syndrome
If you are the parent or caregiver of a child/children living with Alport syndrome in the United States, please consider enrolling them today in the new NKF Patient Network – Alport Syndrome. This new registry is a partnership between ASF and the National Kidney Foundation.
Patient registries are the most important way to support rare disease research and build toward potential new therapies. Following the progression of young Alport syndrome patients over time is invaluable to better understanding and treating our disease.
The NKF Patient Network – Alport Syndrome now allows a parent to consent and serve as proxy for enrolling a child/children with Alport syndrome under the age of 18. This expansion means all individuals (adult and pediatric) currently residing in the United States with a confirmed Alport syndrome diagnosis are eligible for enrollment in the NKF Patient Network – Alport Syndrome.
Enrollment is voluntary, free of charge, and all information is de-identified and secure.
Answering All Parents of Children with Alport Syndrome
We’ve worked with parent volunteers and medical professionals to create several new educational resources for parents and caregivers of pediatric Alport patients.
- Click here to view “Tips for Maximizing Pediatric Nephrology Appointments.”These tips were prepared with input from parents of pediatric patients as a quick reference guide to ensure each visit with your child/children’s nephrologist is as productive as possible.
- The ASF website now includes a brand new page of resources for Parents and Caregivers of Pediatric Patients.We want to help you find the most applicable videos, books, and websites for the pediatric patient in your care.
- There is currently one clinical trial open to children with Alport syndrome.The EPPIK Study, sponsored by Travere Therapeutics, is now enrolling children with rare kidney diseases including Alport syndrome patients ages two to seven. To learn more about this pediatric study, read our new FAQ.
Researcher Spotlight: Dr. Korstanje
Closed Captioning is available by clicking the “CC” button.
Ron Korstanje, Ph.D. (Member of ASF’s Scientific Advisory Research Network) discusses what first sparked his interest in genetics, his current Alport syndrome research, hobbies outside the lab, and more! Learn about his studies of bear kidneys and all sorts of surprising animals, and why he finds research in Alport syndrome to be so unique.
Family & Loved Ones of Alport Patients: Join Us May 3rd
Spouses, siblings, cousins, grandparents, parents – our rare disease affects the whole family. If you love someone living with Alport syndrome, ASF has got your back!
Join ASF’s Emerging Leadership Council members to share and discuss your experiences caring about someone living with Alport syndrome. It’s a great way to learn from each other.
You’re Invited: May 3, 2022
60-minute Direct Connect conversation
4:30pm Pacific / 5:30 Mountain / 6:30 PM Central/ 7:30pm Eastern Time
The event is free, but requires pre-registration at the link below
Check Out Podcasts About Alport Syndrome
Listen to patients and medical professionals talk about Alport syndrome on a variety of podcasts now available in one convenient place on ASF’s Podcast page.
Four female patients recently volunteered to share their Alport syndrome journeys as part of a podcast series for Alport Awareness Month. One is both a patient and medical student studying nephrology. Thank you to these volunteers and to our great partners at Remember the Girls.
Earlier this year, Drs. Kashtan and Rheault of ASF’s Medical Advisory Committee discussed diagnosis and treatment on “The Kidney Chronicles.”
Listen to all this content and more while walking, working, or hanging out!
