Puzzles can be frustrating! The more complicated the picture, the harder the puzzle. And nothing is more frustrating than missing puzzle pieces!
Nephrotic Syndrome is an especially complicated puzzle. Why do some patients respond to steroids while others don’t? What role to our genes play in how these diseases progress? How come some people get FSGS as children while others are diagnosed as adults?
Like puzzle pieces, patients with Nephrotic Syndrome are each unique and vitally important. We need every single piece of the puzzle to make the picture complete. Each patient story gives nephrotic syndrome researchers good information that will help us understand these diseases. Researchers have set up a variety of studies and databases to collect and organize these patient stories. NephCure Kidney International supports all of these efforts because each adds to the big picture.
Our goal with this newsletter, is to help you understand the different efforts, what makes them unique, and how you can get involved.
*These efforts are all US-based. For more information about similar international projects, see the UK-based National Registry of Rare Kidney Diseases (RaDaR) and INSIGHT (Insight Into Nephrotic Syndrome: Investigating Genes, Health and Therapeutics), a Canadian study of pediatric nephrotic syndrome.
For frequently asked questions about getting involved with one of these projects, click here.
Thank you to Hailey Desmond, Corinna Bowers, Tina Mainieri, Dr. Laura Mariani, Dr. Larry Greenbaum, and Dr. Jonathan Hogan for their help with creating this “Strength In Numbers” content.