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2024 World PVNH Day
About
About PVNH
What is PVNH
PVNH Awareness Pamphlet
X-Linked PVNH caused by FLNA loss-of-function mutation
Life with PVNH
Ella’s Disease: X-Linked PVNH
About PVNH Support & Awareness
Mission & Vision
Leadership
Research
Current Research Projects
Advocacy
Alliances & Resources
PVNH Around the World
Copyright
Medical Disclaimer
About Ella
Ella’s Story
Video of Ella’s Story
Ella’s Fast Facts
About Ella’s Mom – Yolaine Dupont
Misplaced Neurons – Podcast Video series
Research
Scientific Update
Awareness Events
World PVNH Disorder Awareness Day
Help Us Request Proclamations & Illuminations
2024 World PVNH Day, also in support of GMH and SBH
2023 World PVNH Day
2020 World PVNH Disorder Awareness Day Events
2022 World PVNH Disorder Awareness Day
2018 PVNH Awareness Day Events
2019 World PVNH Disorder Awareness Day Events
2021 World PVNH Disorder Awareness Day
2017 World PVNH Day Events
World PVNH Day August 7, 2016
2015 – 4th edition
World PVNH Awareness Month
PVNH Awareness Month
Dealing with Medical Professionals
Stories
Faces of PVNH
Ella
Yolaine, Ella’s Mom
Jacqueline
Maggie
Jackie’s daughter
Jonathan
Joanna, Jonathan’s Mom
Memorial Wall
Blogs
Call for Abstracts
In The News
Ella & Mom in the Media: Interviews and more
Press Releases
2024 PVNH Day Press Release
World PVNH Day 2016 – Press Release
2019 PVNH Day Press Release
2013 WORLD PVNH DISORDER AWARENESS DAY
Aug. 3, 2012 – Launch of First World PVNH Support & Awareness Day
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Contact
Volunteers Needed
Press Releases
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Your contributions fuels our mission. Every dollar helps us support families, create and distribute awareness tools, host educational events for families and medical professionals, travel (occasionally) and most importantly: research. Thank you!