Bilateral renal agenesis


Are there good support groups for people affected by bilateral renal agenesis?

Because babies with bilateral renal agenesis rarely live into childhood, there are few support groups specific to the condition.

Facebook has a closed group called, "Bi-Lateral Renal Agenesis (Potters Syndrome)". They say they are "A group for discussion with others that have been touched by loss due to Potters Syndrome. And to hopefully answer any questions that you may have." You can find them at

For parents of those who have experienced the death of an infant or the loss of a pregnancy related to any cause including bilateral renal agenesis, you may wish to be involved with Helping After Neonatal Death. ( )

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