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Caring for Children diagnosed with Organic Acidopathies

There is assistance for those diagnosed with Organic Acidopathies (OA) like Propionic Acidemia (PA) or Methylmalonic Acidemia (MMA) 

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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