The IgAN Foundation and the National Kidney Foundation partnered to bring together patients, pharmaceutical companies and the FDA for an Externally Led-Patient Focused Drug Development Meeting.
The goal of this meeting was to have patients tell their stories and present information to the pharmaceutical companies about their side effects to current medications, day-to-day living with IgAN and the impacts on their lives.
The FDA was there to hear now new medications are needed NOW and to decide whether to include the current IgAN clinical trials for their fast-track rare disease program in getting these new medications to market.
Some of the biggest take-aways from this meeting are patients need something other than prednisone as a treatment. Fatigue and mental health were two of the biggest complications patients deal with accompanied by joint aches & pains. Patients also commented on how great it was to meet other patients and be able to have others to relate to.