Top Tweets for #FLNAmutation
12 years... Yet, it feels like yesterday. ๐ท Jane Eaton Hamilton for Now I Lay Me Down To Sleep.
#PVNH
#XLinkedPVNH
#FLNAmutation
#FLNAdeficiency
#FLNAlungdisease
#Diaryofabereavedmom
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
So grateful for #PVNHadvocates, such as Jonathan, who allow me to share extraordinary stories. Today is his 1-month #heartiversary following a #hearttransplant needed due to #XLinkedPVNH complications. ๐ #PVNH #PVNHawareness #FLNAmutation #transplant #organdonation #givelife
This week, we celebrate a huge milestone, along one of our own. We celebrate Jonathanโs 1-month heartiversary. You see, exactly a month ago today, on December 29th, Jonathan was granted the gift of life by a generousโฆ https://t.co/PrhFgFEkZt
Thrilled that my time in #Marseille is paying off big time in developing #PVNH #expert #collaborations :-) Europe, I find, is further ahead.
#PVNHawareness
#FLNAmutation
#periventricularheterotopia #sbh #raredisease #epilepsie #epilepsy #maladiesrares #heterotopiesneuronales
Today was all about getting #labs to add #FLNA to #pulmonary #panels + scoping out #posters about #PVNH/FLNA. Happy to see Dr. Kini, whom I've met and presented to in #Oxford, and team get accolades. #PVNHawareness #FLNAmutation #DCX #ERMARD #NEDD4L #ASHG19 #DDDstudy
Day 1 of #2019ggsummit was amazing, and filled with inspiration and precious rare networking and connections. Here's to more today! #PVNHawareness #PVNH #FLNAmutation #InMemoryofElla #raredisease #globalgenes @ Sanโฆ https://t.co/t9rp1CNNK4
A #fuzzy #picture is always better than no picture at all. #Ella on 24/11/08, headed #home for what we did not know would be her #laststay. She'd spent the previous day being #cuddled by her #careteam who #lovedher so much.
โค๐โค #PVNH #PVNHawareness #FLNAmutation #Lungdisease
#sunshine is the best #cure for the #heart & the #soul. #diaryofabereavedmom #inmemoryofElla #PVNH #PVNHawareness #FLNAmutation
Because it's on from down under to North America, one time zone at a time!
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#pvnh
#pvnhloud
#PVNHday
#raredisease
#epilepsy
#flnadisorder
#FLNAmutation
#ARFGEF2
#ERMARD
#FAT4 https://t.co/gR28kvVUk4
Differential regulation of two FLNA transcripts explains some of the phenotypic heterogeneity in the loss-of-function filaminopathies in #HumanMutation #OpenAccess #PVNH #FLNAmutation ttps://doi.org/10.1002/humu.23355
Miss M is recovering in #Germany from a #lungtransplant. Help us send #healingvibes to her & her family. We also want to honour the #donor & family who gave M this incredible #gift. #organdonationsaveslife #beanorgandonor #PVNHawareness #FLNAlungdisorder #FLNAmutation
#giftoflife
Miss M is recovering in #Germany from a #lungtransplant. Help me send #healingvibes to her & to her family. I also want to honour the #donor & family who gave M this incredible #gift. #organdonationsaveslife #beanorgandonor #PVNHawareness #FLNAlungdisorder #FLNAmutation
#givelife
#MarchOnPVNH #Day21 = #Yellow. The other #half of #PVNHDay. The #cultural link to #Ella's #Trinidadian #heritage and the #colour of her #christeninggown. #PVNHawareness #XLinkedPVNH #FLNAmutation #OurPVNHlife #Myheart
#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
15/09/08. #Ella showed signs of #raredisease. Her #breathing was off. No one listened. #FLNAmutation destroyed her #lungs. #Myheart #Mylove
We're uniting our voices today to raise awareness of PH and associated diseases like #XlinkedPVNH and #FLNAmutation. https://t.co/sYgLpT3jw8
It's #WorldPHday! PH is often associated with #XlinkedPVNH caused by #FLNAmutation. Knowing about it can help save lives. #FLNAlungdisorder https://t.co/qLRnY2HQQI
It's #WorldPHday! PH is often associated with #XlinkedPVNH caused by #FLNAmutation. Knowing about it can help save lives. #FLNAlungdisorder https://t.co/qLRnY2HQQI
HAPPY #WORLDPHDAY! We're celebrating by launching our brand new #SometimesItsPH campaign targeting medical... https://t.co/ktpKTPbAdo
So #grateful for the team @TexasChildrens!! #XLinkedPVNH due to #FLNAmutation took @PVNHsupport's heart and soul: Ella & sadly, other kids. https://t.co/SIRymjwCSV
Lung Transplantation for FLNA-Associated Progressive Lung Disease https://t.co/SjuFKs5fpl
On 3/27/09, #Ella grew her wings. Today, please #payitforward in her honour. #PVNHawareness #MarchOnPVNH #FLNAmutation #LungDisease #NILMDTS
Happy #Halloween! Ella, the #cutestpumpkin, on her 1 & only, at #BCCH in 2008. #InmemoryofElla #mylove #mylife #PVNHawareness #FLNAmutation
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