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PVNH Support

@PVNHsupport

International community for Periventricular Nodular Heterotopia(PVNH),GMH,SBH disorders. Unite.Educate.Research. Find a cure. #PVNH #FLNA #MarchOnPVNH @PVNHday

 Vancouver
pvnhsupport.com
Joined January 2012
  • Tweets752
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  • Followers454
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Photo by PVNH Support (@PVNHsupport)Photo by PVNH Support (@PVNHsupport)Photo by PVNH Support (@PVNHsupport)Photo by PVNH Support (@PVNHsupport)Photo by PVNH Support (@PVNHsupport)Photo by PVNH Support (@PVNHsupport)Photo by PVNH Support (@PVNHsupport)Photo by PVNH Support (@PVNHsupport)Photo by PVNH Support (@PVNHsupport)
Here we go!! 🩷💛🩷 🧠
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Are you #pinkandyellow ready for #World @PVNHday on August 7th, also in support of GMH and SBH? It started on August 2nd in Melbourne, and continues tonight in Perth, Australia before making its way to Canada and USA.
Image from PVNH Support (@PVNHsupport)
Image from PVNH Support (@PVNHsupport)
Image from PVNH Support (@PVNHsupport)
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Connection • Learning • Hope ⚠️ Early RSVP is now open and space will be limited. Reserve your spot today: 2026 International Neuronal Heterotopia Conference RSVP | Unite. Educate. Advocate. Find A Cure. share.google/4Vb7VQiNOeDqR5s… #PVNH #GMH #SBH #RareDisease #NeuronalHeterotopia
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It's official! RSVP now to save your spot!! WE’RE MEETING AGAIN 🩷💛💜💛🩷 Join families, adults, researchers, clinicians and advocates from around the world for the 2026 International Neuronal Heterotopia Conference. 🧠 PVNH • GMH • SBH 📍 Montréal, Québec, 📅 October 17–19
Image from PVNH Support (@PVNHsupport)
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Image from PVNH Support (@PVNHsupport)
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Image from PVNH Support (@PVNHsupport)
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Super excited to release a new episode of our #podcast Misplaced Neurons, featuring Sarah Ayala and her daughter Elani, on this #MarchOnPVNH Monday. Thank you Sarah for your advocacy, your raw honesty and for being the wonderful mom you are! youtu.be/L-2obfjRi98?si=bFgW… #PVNH
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Thank you to International League Against Epilepsy (@IlaeWeb) for the update!
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📌 Important read about epileptic seizure classification. ilae.org/updated-classificat… #RareEpilepsy #PVNH #GMH #SBH
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Ful list here pvnhsupport.com/2024-world-p…
Image from PVNH Support (@PVNHsupport)
Image from PVNH Support (@PVNHsupport)
Image from PVNH Support (@PVNHsupport)
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It's here!! @pvnhday !! Help us snap photos of illuminations, show your #pinkandyellow and share your stories!! #PVNH #PVNHloud #worldpvnhday #pvnhday #GMH #SBH #EpilepsyAwareness 🩷💛🩷
Image from PVNH Support (@PVNHsupport)
Image from PVNH Support (@PVNHsupport)
Image from PVNH Support (@PVNHsupport)
Image from PVNH Support (@PVNHsupport)
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#PeriventricularNodularHeterotopia (#PVNH) is a developmental brain disorder that causes learning disabilities and #seizures. This happens when nerve cells abnormally clump around the brain's ventricles.
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There are still too many babies affected by PVNH / FLNA deficiency lung disease that do not survive. It breaks our hearts. Hopefully, the parents got the support they need. We are so sorry for their immense loss. We'll always be there for support. #FLNAlungdisease
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Thank you for your support ! 🩷💛🩷
canadiary (@canadiary) profile picturecanadiary@canadiary4 Aug 2024
#MISSISSAUGA Clock Tower Lighting: World PVNH Day mississauga.canadiary.com/20…
Clock Tower Lighting: World PVNH Day

Clock Tower Lighting: World PVNH Day

Event happening in Mississauga.

mississauga.canadiary.com
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