In 1927, Dr. Cecil Alport published a paper in the British Medical Journal in which he discussed his study of several generations of a family with what earlier physicians had called “hereditary familial congenital haemorrhagic nephritis." So how did this condition come to be named after Dr. Alport?
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.
Registries are an important part of moving research in Alport syndrome forward. Dr. Michelle Rheault, the Co‐Director of the University of Minnesota’s Alport syndrome Treatment and Outcomes Registry (ASTOR) explains how registries work and why you should consider enrolling.
For most Alport syndrome patients and families, a discussion of the genes that carry this disease are the starting place for understanding the way the disease is inherited. However, just a few short decades ago, how the disease was inherited was unknown to the medical and patient communities.
The Alport syndrome Foundation works closely with other organizations to improve the lives of patients impacted by kidney diseases and rare diseases like Alport syndrome. Check out the exciting places we’ll be in the next few months!