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    • World PVNH Disorder Awareness Day
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    • About PVNH
      • What is PVNH
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      • X-Linked PVNH caused by FLNA loss-of-function mutation
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    • Ella & Mom in the Media: Interviews and more
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      • 2019 PVNH Day Press Release
      • World PVNH Day 2016 – Press Release
      • 2013 WORLD PVNH DISORDER AWARENESS DAY
      • Aug. 3, 2012 – Launch of First World PVNH Support & Awareness Day
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World PVNH Awareness Month

March is PVNH Disorder Awareness Month!  Find out more about #MarchOnPVNH on our PVNH Support & Awareness Facebook Page   

#MarchOnPVNH

#MarchOnPVNH

#MarchOnPVNH

  • Your contributions fuels our mission. Every dollar helps us create and distribute awareness tools, host educational events for families and medical professionals, travel (occasionally) and most importantly: research. Thank you!

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    PVNH Support & Awareness

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