PVNH Support

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

[PVNH Support @PVNHsupport]

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. https://t.co/CdM4gPcGPW
#PVNH #GMH #SBH #RareDisease #NeuronalHeterotopia

[PVNH Support @PVNHsupport]

It's official! RSVP now to save your spot!! WE’RE MEETING AGAIN
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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

[PVNH Support @PVNHsupport]

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!
https://t.co/nTjOh90ltK
#PVNH

[PVNH Support @PVNHsupport]

Thank you to International League Against Epilepsy (@IlaeWeb) for the update!

[PVNH Support @PVNHsupport]

📌 Important read about epileptic seizure classification.
https://t.co/AHLOCmO1hN
#RareEpilepsy
#PVNH
#GMH
#SBH

[PVNH Support @PVNHsupport]

Ful list here
https://t.co/BsN8gEhVc1

[PVNH Support @PVNHsupport]

It's here!!
@pvnhday !! Help us snap photos of illuminations, show your #pinkandyellow and share your stories!!
#PVNH #PVNHloud #worldpvnhday #pvnhday
#GMH #SBH #EpilepsyAwareness
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[Epilepsy Foundation of Australia @epilepsy_fdn]

#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.

[PVNH Support @PVNHsupport]

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

[PVNH Support @PVNHsupport]

@MarkELindsay Thank you for helping to bring awareness to X-linked PVNH/ FLNA deficiency lung disease!
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[PVNH Support @PVNHsupport]

@ismailamehesen Congrats! Hope you'll join us for @PVNHday on Aug. 7!
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[PVNH Support @PVNHsupport]

@ismailamehesen Congrats! Would love to read it!

[PVNH Support @PVNHsupport]

@com_at_une Would love to hear more!

[PVNH Support @PVNHsupport]

Thank you for your support !
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[canadiary @canadiary]

#MISSISSAUGA Clock Tower Lighting: World PVNH Day https://t.co/OPZcumQVMx

[PVNH Support @PVNHsupport]

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?
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#BecauseWeCan

[PVNH Support @PVNHsupport]

2/2 impacted your view on the PVNH, GMH, or SBH diagnosis you or your loved one lives with?
#PVNH #GMH #SBH #Hope

[PVNH Support @PVNHsupport]

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

[PVNH Support @PVNHsupport]

@ShaineMorris1 @SaraStephens29 @TCHheartcenter @UTHealthSPH @DrKeilaLopez @plupo1 @DrKBSalc Congrats @SaraStephens29!