Top Tweets for #flnamutation
12 years... Yet, it feels like yesterday. 📷 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. 💓 #PVNH #PVNHawareness #FLNAmutation #transplant #organdonation #givelife
This week, we celebrate a huge milestone, along one of our own. We celebrate Jonathan’s 1-month heartiversary. You see, exactly a month ago today, on December 29th, Jonathan was granted the gift of life by a generous… 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 @ San… https://t.co/t9rp1CNNK4
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