Top Tweets for #PKDeficiency
New hope for PK Deficiency patients!
PYRUKYND® (pegcetacoplan) is now available in Europe, marking a major step forward in rare disease treatment.
#RareDiseases #PKDeficiency #Healthcare #PharmaNews
Incredible discussion on the Life Stage Model of PKD. A big thank you to the community for sharing invaluable insights on living with pyruvate kinase deficiency. Together, we are making strides in awareness and advocacy! Tune in now https://t.co/IWH8vVmkhH 🎧 #PKDeficiency
🎙️ Just Listen: Voices of #PKD! Today we discussed advocacy, support, & the power of unity from the recent PKD conference. 🌏 Tune in now https://t.co/IWH8vVmkhH 🎧 #PKDeficiency
🎙️ Just dropped a new episode of "Just Listen: Voices of PK Deficiency"! Special thanks to Dr. Tamara Shryver for sharing invaluable insights on optimizing nutrition & physical activity for those with PKD. Tune in now https://t.co/IWH8vVmkhH 🎧 #PKDeficiency @AgiosPharma
🎙️ New episode alert! Dive into "Just Listen: Voices of PK Deficiency" as Dr. Rachael Grace talks with Dr. Sateesh Chonat about managing anemia in PK deficiency and the role of spleen removal. Don't miss out! https://t.co/IWH8vVmkhH 🎧 #Podcast #PKDeficiency @AgiosPharma
We announced the topline results of our first pediatric data readout, ACTIVATE-KidsT, a clinical study in children with #PKdeficiency who are regularly transfused. See our press release for a high-level summary of the data: https://t.co/GO4QJEp502
🎙️ Just dropped! Tune in to the latest episode of "Just Listen: Voices of #PKDeficiency" for a deep dive into the new international #guidelines for #PKD, set to revolutionize #patientcare for those with the condition.
🔗 https://t.co/NfEjiOoBdt
#RareAnaemias #RAIN @AgiosPharma
Last week, we enjoyed presenting at @TwPKDnonprofit's 2nd International Pyruvate Kinase Deficiency Conference. Our team members discussed how the Peak Registry is seeking to make #pkdeficiency (PKD) data more accessible and shared insights from our Phase 3 ACTIVATE-KidsT study.
Help doctors uncover more about monitoring and managing #PKdeficiency by participating in the Peak Registry. Participation does not require any lab testing or additional visits. Learn more: https://t.co/MLVrw6gTwg
Pyruvate kinase (PK) deficiency is rare, but awareness shouldn’t be. By joining the Peak Registry, help doctors better understand how to diagnose, monitor, and manage #PKdeficiency. Learn more and join now here: https://t.co/K2c0YSJNlj #YoungEHA #HemaSphere #EHA2024
On the new episode of “Just Listen: Voice of #PKDeficiency Promotion,” host Dr. Rachael Grace talks with Jessica Kellar and her teenage son Travis about how to best prepare children and teenagers for the to transition to adult #PKD care. Listen here: https://t.co/KZiXm8jVHU
Mitapivat, a pyruvate kinase activator, provides durable and clinically meaningful benefits in the signs, symptoms and impacts of #PKdeficiency as assessed by disease-specific patient-reported outcome measures in two phase 3 clinical trials https://t.co/yID2FmMGPQ
#hematology
We are pleased to announce our newest social channel, "Ally Voices Rising," on Instagram – a platform to raise awareness about hemolytic anemias such as #thalassemia, #sicklecell disease, and #PKdeficiency. Check out @allyvoicesrising on Instagram here: https://t.co/PYflZpuaOt
Did you know individuals with #pkdeficiency (PKD) rely on frequent blood transfusions? April 30th signifies the 120th day of the year, highlighting the lifespan of a healthy #redbloodcell (RBC). Watch the animation below to learn about the lifecycle of a RBC in patients with PKD.
Are you or someone you know living with pyruvate kinase (PK) deficiency? U.S. residents can now enroll remotely in the Peak Registry, a global patient database for patients with #PKdeficiency, sponsored by Agios. Learn more and enroll here: https://t.co/K2c0YSJNlj
Today on #RareDiseaseDay, learn from Tamara who is living with #PKdeficiency (PKD) and is an advocate for #rarediseases as president of @TwPKDnonprofit's support group. See below as she shares stories she's learned from others in the PKD community.
#RareDiseaseDay falls on the rarest day of the year, 2/29! We're looking forward to highlighting the community of warriors we work with all month long to bring awareness to those living with #sicklecelldisease, #PKdeficiency, and #thalassemia! Learn more: https://t.co/k6uqh4aPkK
On this episode of Just Listen, Dr. Grace speaks with Carl Lander about how The Peak Registry seeks to help doctors and researchers better understand #PKdeficiency by assessing information on how patients are affected. https://t.co/ZnWUTwlMLl
Our team left #ASH2023 feeling inspired. What an incredible time joining together with the #hematology community and sharing abstracts of our own regarding our contributions and latest developments in #sicklecelldisease, #thalassemia and #PKdeficiency. Check out highlights below!
It's International PKD Day, dedicated to raising awareness of the needs & experiences of those with #PKdeficiency. See below as #patientadvocate Jill and President of @TwPKDnonprofit Tamara discuss the importance of sharing relationships with others in the PKD community. (1/2)
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