Top Tweets for #PVNHsupport
Thank you @BpGenetics for helping us to bring more awareness to #rarediseases and to #MCD such as #PVNH, #GMH and #SBH.
Rare is us
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#Rarediseaseday2022
#pvnhsupport
For #RareDiseaseDay, we had the privilege of speaking with Yolaine Dupont about her daughter Ella, their diagnostic journey, and her experience as a patient navigator and founder of @PVNHSupport.
Watch our interview to learn more: https://t.co/L7bvWmyxVG
Rare is many.
Rare is strong.
Rare is proud.
Rare is my PVNH Support Community.
Rare is PVNH, GMH and SBH.
Rare is me. Rare is you.
Rare is us.
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#Rarediseases
#Rarediseaseday2022
#PVNH #GMH #SBH
#PVNHsupport
#PVNHawareness
Celebrating #RareDiseaseDay, with a touch of yellow added to the green, pink, purple and blue flowers I picked up for the occassion. Love that I have a mask which mirrors those colours :-)
#InmemoryofElla
#XlinkedPVNH
#PVNH
#PVNHsupport
#FLNA
#FLNAmutation
#Iamrare #jesuisrare
PVNH Month, Day 16 #WARRIOR
Our PVNH Community is comprised of brave warriors of all ages. You want to be a warrior too? Do your part to help flatten the curve and stay home.
#MarchOnPVNH #PVNHsupport #SBH⦠https://t.co/MEVZ5zkOTz
The Spinnaker Tower is pink tonight for #pvnhday19! Find out more at: https://t.co/BHIZiql0k6 #pvnh #pvnhloud #pvnhsupport #pvnhawareness #pinkandyellow #spinnakertower #epilepsysociety #epilepsyawareness
The Spinnaker Tower is pink tonight for #pvnhday19! Find out more at: https://t.co/Eu1Cs2Egm7 #pvnh #pvnhloud #pvnhsupport #pvnhawareness #pinkandyellow #spinnakertower #epilepsysociety #epilepsyawareness
How do our #PVNH #families get ready for #PVNHday? There are tons of ways to paint your #life #pinkandyellow! Be creative, have fun :-)
#PVNHloud #PVNHawareness #ourPVNHlife #PVNHsupport⦠https://t.co/CP18ZPEeLf
#photographers, help! 11 landmarks to glow for #PVNHday! Looking for dusk & night #photos of #peacebridge, #bcplace #NiagaraFalls #cntower #calgarytower #highlevelbridgeyeg #SpinnakerTower #swanbelltower #sailsoflight #scienceworld #vancouvercityhall #pvnhloud #PVNH #PVNHsupport
#Day1 of #PVNHmonth Photo Challenge = #diagnosis. It took 6 months after Ella's death for a diagnosis to be confirmed. We are one of the lucky ones with answers. #MarchOnPVNH #PVNHawareness #PVNHsupport #XLinkedPVNH #FLNAmutation #FilaminA
ππWearing pink or yellow for world PVNH awareness day. Show your support #PVNHday17 #PVNHsupport #Happy9thElla
Thank you @CanadaPlace for the #pinkandyellow #SailsOfLight last night for #PVNHday17!! #PVNHawareness #PVNHsupport #WorldPVNHday #Aug7 ππβ€οΈ
#RareDiseaseDay has reached Vancouver! For the 7th year, I'm raising awareness for #WRDD and #PVNH in memory of Ella. #PVNHsupport #WRDD16
6 years of support to #PVNHfamilies and educating the world. #EllasLegacy #PVNHsupport⦠https://t.co/trifSlX95q
Next Thurs, 8/7 is World PVNH Day. Wear pink and/or yellow. Tweet me your photos and make sure to use #pvnhsupport #4ava
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