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Caring for Children diagnosed with Organic Acidopathies

Caring for a loved one diagnosed with an Organic Acidopathy (OA) like Propionic Acidemia (PA) or Methylmalonic Acidemia (MMA) can be overwhelming and isolating. 

You are not alone.
If you need help, reach out. 

100 caregivers of children diagnosed or suspected of having either PA/MMA contributed to a survey launched in April, 2022 to better understand the lived-experience of caregivers caring for children diagnosed with PA/MMA.

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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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You have the power to report your experiences (whether positive, negative or a combination of both) with any company or agency conducting market research on PA or MMA to the Rare Advocacy Movement's Rare360 Market Research Ethics Review Board. By sharing your experiences, you help to make market research conducted on behalf of the pharmaceutical industry a better experience for the people of the rare disease community.

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