2018 PVNH Awareness Day Events

Aug 1-31, The Regal Beagle, Vancouver, BC

Join us all August at The Regal Beagle in Vancouver, BC for the month long PVNH Research fundraiser. During August, $1 of selected sleeves will go to PVNH Support & Awareness’ research fund. Our goal is to positively impact affected individuals’ lives and ultimately, provide better treatment and care options for PVNH-affected babies, kids and adults around the world. 
UNITE. EDUCATE. ADVOCATE. FIND A CURE.

PVNH research fundraiser

Aug. 6, 2017, Vancouver, BC, Canada 

For the 5th year, Canada Place in Vancouver, BC, Canada will glow pink and yellow in support of #PVNHfamilies. This year, lighting will be on August 6, one day ahead of World PVNH Disorder Awareness Day. Join us for this illumination at Canada Place and take photos. You can tag them to World PVNH Disorder Awareness Day – Aug. 7 and PVNH Support & Awareness using #CanadaPlace #PVNHDay2018 #PVNHawareness #PVNHday

BC Place glows pink and yellow

 13754491_1101041079962357_7044114897971921002_n (1)

 Photos : BC Place & @mjduartejr

Aug. 7, Portsmouth, UK

For the 4th time, Emirates’ Spinnaker Tower in Portsmouth, UK will glow pink in support of #PVNHfamilies on August 7 for World PVNH Disorder Awareness Day. Join us for very illumination at Spinnaker Tower and take photos. You can tag them to World PVNH Disorder Awareness Day – Aug. 7 and PVNH Support & Awareness using #SpinnakerTower #PVNHDay2018 #PVNHawareness #PVNHday

Spinnaker Tower goes pink for World PVNH Day

Photo: Matt Whiteman

 August 7, everywhere

Wear pink and/or yellow on August 7th in support of the 400+ PVNH-affected families from 31 countries around the world as well as those with other types of neuronal heterotopia disorders! 

Families, friends, PVNH specialists and researchers, allies in the rare disease and medical worlds will join us too. Will you be there?

Don’t forget to follow us and share your photos of PVNH Day on Facebook, Instagram and Twitter @PVNHday. You can also add them on the PVNH Support & Awareness public page on Facebook and on Twitter and Instagram @PVNHsupport. Use #PVNHday2018 #PVNHsupport #PVNHday. And remember to have fun on that very special day. Feel free to also wish #Happy10thElla!!!