PVNH Support @PVNHsupport
International community for Periventricular Nodular Heterotopia(PVNH),GMH,SBH disorders. Unite.Educate.Research. Find a cure. #PVNH #FLNA #MarchOnPVNH @PVNHday pvnhsupport.com Vancouver Joined January 2012-
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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/4Vb7VQiNOeDqR5… #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
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… #PVNH
Thank you to International League Against Epilepsy (@IlaeWeb) for the update!
📌 Important read about epileptic seizure classification. ilae.org/updated-classi… #RareEpilepsy #PVNH #GMH #SBH
Ful list here pvnhsupport.com/2024-world-pvn…
It's here!! @pvnhday !! Help us snap photos of illuminations, show your #pinkandyellow and share your stories!! #PVNH #PVNHloud #worldpvnhday #PVNHday #GMH #SBH #EpilepsyAwareness 🩷💛🩷
PVNH Support retweeted
#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.
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
@MarkELindsay Thank you for helping to bring awareness to X-linked PVNH/ FLNA deficiency lung disease! 🩷💛🩷
@ismailamehesen Congrats! Hope you'll join us for @PVNHday on Aug. 7! 🩷💛🩷
@ismailamehesen Congrats! Would love to read it!
Thank you for your support ! 🩷💛🩷
#MISSISSAUGA Clock Tower Lighting: World PVNH Day mississauga.canadiary.com/2024/08/clock-…
Will you join in and wear pink and/or yellow in support of impacted families, and ask us about World PVNH Day, PVNH, GMH, and SBH? 🩷💛🩷 #BecauseWeCan
1/2 #MarchOnPVNH It is fitting we end this month on hope. Hope is the one thing we all have that carries us through the hard days. Hope of relief for our afflicted loved ones, hope for greater research and answers, and hope for an eventual cure. How has hope for the future
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