R.F. (61) – Kidney patient

Over 25 years ago, I was diagnosed with kidney disease (IgA Nephropathy). Before that time and for the first few years thereafter, I actually suffered very little, until a transplant became necessary in 2004. Even after eighteen years, the transplant kidney is still doing an excellent job and has allowed me to participate fully in social life. In the meantime, however, I have had to stop working and now fill my time, among other things, with volunteer work for the Netherlands Kidney Patients Association (NVN). One of the things I am involved in is assessing research proposals from the patient’s point of view: what does research mean for the patient, what does it yield, what is the burden and, above all, is it clear. The Renal Lifecycle study on the SGLT2 inhibitors sounds promising and is a project to which I am happy to contribute as a patient reviewer in the coming years. To think about how a study should be shaped from the patient’s point of view is always interesting and hopefully provides some additional benefit.

H.B. (56) – Donor and mother of a kidney patient

It has been 13 years since I donated a kidney to my son. He had been diagnosed with kidney disease (focal segmental glomerulosclerosis, FSGS) 2 years earlier. After 4 years the kidney unfortunately had to be removed again and my son now does hemodialysis at home at night. This is going well. I enjoy volunteering with the Netherlands Kidney Patients Association (NVN) because I think it is important that the voice of the patient is heard. From our participation in the Patient Advisory Council for Scientific Research (PARWO, read more here: Patient Advisory Council – Kidney Patients Association of the Netherlands (nvn.nl)), we get a chance to think along with scientific research in order to make it as close as possible to what is good for patients. The Renal Lifecycle study will look at whether a diabetes drug, dapagliflozin (an SLT2 inhibitor), can help with kidney and heart problems for people with severe kidney damage, including dialysis and transplant patients. According to the researchers, the development of SGLT2 inhibitors “has been the most significant advance in the treatment of kidney patients in the past 20 years. Some 1,500 participants are being sought. I sincerely hope to contribute to a feasible study and good information for the participants.