Margarida Azevedo, MSc,  —

The Alport Syndrome Foundation, Pedersen Family and Kidney Foundation of Canada are calling for research proposals for 2018. Their funding program is for studies with the potential to improve patients’ kidney failure and hearing loss. Priority will be given to projects that target pathways in the disease’s progression or  that…

The EveryLife Foundation is accepting applications for travel stipends to help those with limited means attend Rare Disease Week on Capitol Hill in Washington in early 2018. The Alport Syndrome Foundation is encouraging patients and caregivers to attend the event in late February and March. It will allow Americans with…

A research funding program run by the Alport Syndrome Foundation (ASF), the Pedersen family and the Kidney Foundation of Canada has awarded two researchers $100,000 each to advance projects on Alport syndrome. The program supports studies that seek new ways to prevent kidney damage and hearing loss in Alport patients. It places emphasis on research to identify and…

Since a Pennsylvania mother of two underwent a kidney transplant, whose donation was due to a video that her children had posted on Facebook, the National Kidney Registry’s (NKR) Paired Exchange Donation program has been gaining increasing attention. Diana Zippay, 36, began to lose kidney function as a result of her Alport…

Reata Pharmaceuticals has enrolled the first patient in the Phase 3 portion of a clinical trial evaluating bardoxolone methyl as a treatment for chronic kidney disease stemming from Alport syndrome. The syndrome is characterized by progressive kidney failure that can lead to chronic kidney disease, or CKD. About half…

Diana Zippay, from Monongahela, Pennsylvania, and diagnosed with Alport Syndrome, recently announced on her Facebook page that she has found a lifesaving kidney donor and soon will receive the transplant that will give her a second chance at life. Zippay said she found a donor through the United Network…

The Alport Syndrome Foundation (ASF) welcomes all who are interested to take part in its 2nd Annual Virtual Walk, a fundraising event to help fight Alport syndrome. Virtual walk participants can walk anytime, anywhere, and with anyone. There’s no cost to participate. Anyone who wants to take part can register here for…

The Alport Syndrome Foundation is one of 14 patient advocacy organizations that has received Global Genes‘ 2017 RARE Patient Impact Grants, for their work supporting patient communities of rare diseases. The initiative was launched at the 2015 RARE Tribute to Champions of Hope to offer financial support to patient advocacy…

Reata Pharmaceuticals has named a new marketing chief while continuing to recruit participants for a Phase 2/3 clinical trial evaluating bardoxolone methyl for those with chronic kidney disease (CKD) stemming from Alport syndrome. David Chapman becomes Reata’s vice president of marketing after more than 25 years of biopharmaceutical sales, marketing and…

Screening has begun in people with chronic kidney disease (CKD) caused by Alport syndrome, who are looking to take part in a Phase 2/3 clinical trial evaluating the efficacy of bardoxolone methyl, a therapy being developed by Reata Pharmaceuticals. The two-part study, called CARDINAL (NCT03019185) will assess the safety, tolerability, and…