Primary Distal Renal Tubular Acidosis
How do I find a center of excellence in Primary Distal Renal Tubular Acidosis?
Centers of Excellence for a rare genetic disease like primary distal renal tubular acidosis (primary dRTA) are rare, but can often be found by looking to see who is participating in clinical trials. Typically, a doctor who is doing research in primary dRTA will have a deeper and more thorough understanding of the genetic condition and may know where other doctors familiar with caring for and treatment primary dTRA can be found. One example of a key investigator in primary dRTA is Laurence Greenbaum, MD, Ph.D at Emory University website.
Another way to find a Center of Excellence in primary dRTA is by talking to others living with primary dRTA. One place to find caregivers and people living with primary dRTA is the ATP6V1B1 Renal Tubular Acidosis Kids With Hearing Loss Facebook page.
Laurence Greenbaum, MD, Ph.D at Emory University website
ClinicalTrials.gov https://clinicaltrials.gov/ct2/results?cond=Distal+Renal+Tubular+Acidosis&term=&cntry=&state=&city=&dist= Accessed 18NOV2018
ATP6V1B1 Renal Tubular Acidosis Kids With Hearing Loss Facebook page