Top Tweets for #PyruvateKinaseDeficiency
Alejandra Watson, @PKDFoundation Board President/co-founder, has expanded the foundation's impact by building a supportive community on social media. Hear from Alejandra as she speaks to the importance of hearing others' stories within the #pyruvatekinasedeficiency community.
EXCITING NEWS: Publication of the 1st international guideline for #PyruvateKinaseDeficiency with the participation of @ERNEuroBloodNet experts! Big achievement for the #PKD community!
#ERNeu #HealthUnion #EU4Health #ShareCareCure @EU_HaDEA @EU_Health @EU_Commission @MMANUPE
NEW online: First international consensus guidelines on the diagnosis and management of pyruvate kinase deficiency https://t.co/PpXVrRKReo
FRESH NEWS!!!
@ERNEuroBloodNet is involved in the 1st international guideline for #PyruvateKinaseDeficiency!
This is evidence that by working together we are stronger and will benefit #PKD patients: prevalence on 1 in 100.000 to one in 300.000 people.
https://t.co/JRMs2gEwQK
https://t.co/nUbggRWPgb Big milestone for people living with pyruvate kinase deficieny, an ultra rare hematologic condition, 1st International Guidelines, proud and honoured to be part of this great achievement! @ERNEuroBloodNet @CCBD_VHResearch @vallhebron
On the latest episode of the Just Listen podcast, Dr. Grace welcomes Claire Egan, Sr. Genetic Counselor with InformedDNA to better understand the role of #genetic testing in #pyruvatekinasedeficiency. Listen to the episode here: https://t.co/fJR5PwLxTH
Patients living with #thalassemia, #pyruvatekinasedeficiency & #sicklecelldisease face a unique set of challenges in their daily lives. Listen as patients and physicians share a glimpse into a "day in the life" of those living with these chronic diseases. https://t.co/YcLxBcbeae
On today’s episode, we discuss navigating life and aging with #pyruvatekinasedeficiency with returning guests Jill Welle and Tamara Schryver. Listen here: https://t.co/pR0l3Vv7Gn
Revisited:
Learn from experts about the burden and clinical presentation of pyruvate kinase deficiency, plus current and emerging therapeutic strategies.
Watch now: https://t.co/fPfo64w9li
#Haematology #GeneticBloodDisorders #PyruvateKinaseDeficiency #DiseaseModifyingTherapy
How does your State compare? Check out how the State you live in can make a difference in the lives of people living with rare, genetic conditions like #PKdeficiency. 🏥
https://t.co/FVqgW4DHYB
#pyruvatekinasedeficiency #healthaccess #raredisease
Learn from experts about the burden and clinical presentation of pyruvate kinase deficiency, plus current and emerging therapeutic strategies.
Watch now: https://t.co/ytHQjeNfvE
#GeneticBloodDisorders #PyruvateKinaseDeficiency #Paediatrics #DiseaseModifyingTherapy
Managing employment with a #raredisease like #pkdeficiency can be challenging. What tips do you have for successfully maintaining employment or disability funding?
#pyruvatekinasedeficiency #rareanemia #geneticanemia #hemolyticanemia #raredisease #thrivewithpkd
Place your bid for Lilly's "Rare and Wild" oil painting. A perfect piece of art to celebrate the beauty of being rare. 🦓
https://t.co/IKGxTJzolJ
#RDD #RareDiseaseDay #ShareYourStripes #ShowYourColors #PKDeficiency #pyruvatekinasedeficiency #thrivewithpkd
#PKdeficiency is a rare, genetic anemia. Share this post if you or someone you love is affected by a rare disease or #PyruvateKinaseDeficiency.
#PKdeficiencyawareness #RareDiseaseDay #RDD #rareanemias #nonprofit #thrive #shareyourcolors #showyourstripes
This year's theme for #RareDisease day is a focus on #healthequity. For many with #ultrararediseases, this can mean proper diagnosis & access to qualified healthcare providers & treatment.
#pkdeficiency #pyruvatekinasedeficiency #healthcare #rareanemia #equity #nonprofit
#Pyruvatekinasedeficiency is a rare, genetic hemolytic anemia caused by a mutation in the #PKLR gene.
#rarediseaseday #raredisease #rareanemias #pkdeficiency #thrive #nonprofit #notirondeficiency #pkdeficiencyawareness
#TIF, advocating globally for the rights of people with #thalassaemia, #sicklecell disease & #rareanaemias, unites its voice with the #RareDiseaseDay movement & stands in #solidarity with more than 300M people living with a rare condition worldwide.
🔎 https://t.co/YyVYIiVUJ8
Alone we are rare-together we're strong! Each stripe on a zebra is unique & together provide protection. Raise awareness of #rarediseases by reposting & tagging your network! 🦓
#Rareanemias #RareDiseaseDay #ShowYourStripes #PyruvateKinaseDeficiency #PKDeficiency #ThrivewithPKD
Madalyn Marquez speaks out @OnAirwithJT about the stigma & complications of living with #BorderlinePersonalityDisorder & #PKdeficiency. 🎙️
https://t.co/CTP4iRcmPy
#Breakthesilence #MentalHealthAwareness #EndTheStigma #pyruvatekinasedeficiency #rareanemias
Do you know someone with cancer? Someone who is pregnant? Someone with #PyruvateKinaseDeficiency? Then you know someone who may need blood. 🩸
Donate today: https://t.co/EkNPyC4c4h
#NBDM #NationalBloodDonorMonth #ADRP #PKDeficiency #rareanemias #thrivewithpkd #donateblood
The best gift you can give is the gift of life ❤️
#rareanemia #donateblood #holidaygift #pkd #bloodtransfusion #donatebloodsavelives #thrive #pyruvatekinasedeficiency
#Raremoments - when you get to meet an expert #hematologist in PKD, Sickle Cell & Thalassaemia. Thanks for all you do @CaptainAV! #pyruvatekinasedeficiency #hemolyticanemias @AgiosPharma
Last Seen Hashtags on Sotwe
Fundrseinovatinfund
Seen from United States
discord
Seen from United States
伪娘
Seen from Canada
onuaatenaleague
Seen from United States
女同
Seen from United States
paululu
Seen from United States
omegle() filter:videos
Seen from Thailand
女s
Seen from United States
momson filter:videos
Seen from Germany
metisse
Seen from Belgium
Most Popular Users
Elon Musk 
@elonmusk
241.5M followers
Barack Obama
@barackobama
119M followers
Cristiano Ronaldo
@cristiano
114M followers
Donald J. Trump
@realdonaldtrump
111.8M followers
Narendra Modi
@narendramodi
107.2M followers
Rihanna
@rihanna
98.7M followers
NASA
@nasa
92.4M followers
Justin Bieber
@justinbieber
91.8M followers
KATY PERRY
@katyperry
89.8M followers
Taylor Swift
@taylorswift13
83.7M followers
Lady Gaga
@ladygaga
75.2M followers
Virat Kohli
@imvkohli
73M followers
Kim Kardashian
@kimkardashian
70.8M followers
YouTube
@youtube
68.8M followers
Neymar Jr
@neymarjr
66M followers
Bill Gates
@billgates
65M followers
Selena Gomez
@selenagomez
62.9M followers
The Ellen Show
@theellenshow
62.3M followers
CNN
@cnn
61.8M followers
X
@x
60.7M followers