Over the past nine years, ASF has successfully created a landscape that encourages industry, academia and the government to invest in studying Alport syndrome. The result can be seen in the increased number of potential therapies “in the pipeline” to treat Alport syndrome.
ASF is taking steps to better incorporate the patient perspective into our research goals. To better understand the daily and long-term impact that Alport syndrome has on patients and the main concerns patients have about the disease and its progression, we have created a survey.
This is an exciting and busy time at ASF as many steps are being taken towards conquering Alport syndrome. While we are grateful for the lifesaving treatments of dialysis and transplantation, ASF is the only national organization dedicated entirely to finding treatments aimed specifically at Alport syndrome.
My first six weeks as ASF’s first Executive Director have been quite exciting. During that time, I have come to greatly appreciate the importance of raising funds and awareness dedicated specifically to conquering Alport syndrome.