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Caring for Children diagnosed with Organic Acidopathies

100 parents of children diagnosed with Organic Acidopathies (OA) like Propionic Acidemia (PA) or Methylmalonic Acidemia (MMA) have contributed to a survey launched in collaboration with 

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and

As of April 1, 2022

100 caregivers of children diagnosed or suspected of having either PA/MMA contributed to a survey launched in collaboration with RAM and Know Rare.

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75% of caregivers report needing to take their child living with MMA or PA to the hospital on a frequent basis.

2/3 of caregivers report not being satisfied with the current management of their child's PA or MMA.

0 caregivers of children living with PA or MMA report being satisfied with their child's current healthcare management.

Why PA and MMA Caregivers are motivated by Clinical Research? 

Over 1/2 of caregivers report being motivated to participate in clinical research in order to gain access to a promising new treatment for PA or MMA, that may improve their child's quality of life.  

22% of caregivers report being motivated by the opportunity to help bring new treatments to future generations of children with PA and MMA.

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