Primary Distal Renal Tubular Acidosis
Organizations
Are there good support groups for primary distal renal tubular acidosis?
At this time, there is not a formal international or United States based support and advocacy group for primary distal renal tubular acidosis (primary dRTA). However, there are several Facebook pages focused on Primary dRTA such as the
ATP6V1B1 Renal Tubular Acidosis Kids With Hearing Loss Page, Renal Tubular Acidosis Page, and Parents of Children with Renal Tubular Acidosis
In addition, there are other support groups focused on specific symptoms of primary dRTA such as hearing loss and kidney (renal) disease. Examples of those include:
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Where do I find others with primary distal renal tubular acidosis?
Where do I find others with primary distal renal tubular acidosis?
The easiest way to find another family with primary distal renal tubular acidosis (primary dRTA) are the Facebook pages focused on Primary dRTA such as the
ATP6V1B1 Renal Tubular Acidosis Kids With Hearing Loss Page, Renal Tubular Acidosis Page, and Parents of Children with Renal Tubular Acidosis. Another option is reaching out to a Center of Excellence and asking them if there is a family interested and willing to meet other families.