PyruvateKinaseDef

Pyruvate Kinase Deficiency or PKD is a hereditary disease caused by a lack of Pyruvate Kinase; therefore, people with PKD have a severe form of hemolytic anemia

[Know PK Deficiency @PKdeficiency]

Dr Sujit Sheth explains his individualized approach to managing #PK deficiency, based on his discussions with his patients about their needs and expectations. #KnowPKdeficiency

[PyruvateKinaseDef @PyruvateKinaseD]

@NYASciences @ronald_cohn @SickKidsNews Is this event appropriate for patient advocates?

[PyruvateKinaseDef @PyruvateKinaseD]

@NYASciences The price for patients is high! Any discount codes available?

[TIF @thalassaemiaTIF]

EU #patients have begun receiving #transfusions with the Hemanext ONE® RBC Processing & Storage System.
Read more at 👉https://t.co/7PBwhfQ6LE

#Blood #BloodTransfusion #BloodStorage #RBCs #Thalassaemia #SaferBlood #BloodDisorders #Innovation @Hemanext_Inc

[PyruvateKinaseDef @PyruvateKinaseD]

@AaronGoodman33 @acweyand @Sthanu5 @Shematologist Exactly!!!!

[AABB @AABB]

Happy #BloodCollectorsWeek! ❤️ 🩸 AABB is proud to partner with Fresenius Kabi to celebrate blood collectors and their life-saving work. Visit https://t.co/xjvppUc4yv to plan your celebration.

[Thrive w/ Pyruvate Kinase Deficiency Organization @TwPKDnonprofit]

If you're looking for another reason to #donateblood, here's one. Braylon, 7 years old, relies on #blooddonations to manage #pkdeficiency.

Read his story at: https://t.co/m7iDE15AIO.

#pyruvatekinasedeficiency #hemolyticanemia #thrivewithpkd #momvocate #rareanemia

[Anthony Quagliano @ViatorLion10]

Wow this is very much not ok

From the first day of medical school we are taught to not refer to patients as their disease

“Sickler” is one of the top examples of this. Just a big no no in medicine

[Orin Lewis OBE @OrinLewisOBE]

7 minutes later and successfully donated blood for 52nd time. Now just awaiting text informing me which hospital got my donation. @acltcharity @GiveBloodNHS @NBTA_UK

[Patient Worthy @PatientWorthy]

What are some reasons why getting involved in #RareDisease advocacy is so important?

[PyruvateKinaseDef @PyruvateKinaseD]

Listen to, Jill Welle, patient with PKD, Dr. Rachael Grace, PKD expert, Dr. David Nathan, World- Renowned hematologist talk about #PKDeficiency . 🩸🩸🩸
#RareDisease
#HemolyticAnemia
#PyruvateKinaseDeficiency
#Hematology
https://t.co/bskTzZ2Ywn

[LifeStream Blood Bank @lifestreamblood]

ATTN❗: LifeStream’s blood supply is down to just HOURS on hand. Please see the press release below regarding our inventory. For more info or to make an appointment, call 1-800-879-4484 or visit https://t.co/RXeAM8wls9.

[Pat McGann, MD @PTMcGann]

Words matter

Don’t use a note or patient presentation to highlight stigmatizing or medically irrelevant information about a patient’s personal life

These comments and words are read/heard and color how the patient is treated

Speak about each patient as if they’re your family

[TIF @thalassaemiaTIF]

A study published in Journal of Blood Medicine showed regular #blooddonors have a lower risk of cardiovascular #complications & other chronic #inflammation, due to them presenting lower TC, TG & #LDL #cholesterol values than first-time donors.

📌https://t.co/wd0MfhIQEI

[PyruvateKinaseDef @PyruvateKinaseD]

Something to keep in mind when pouring over the #PKDeficiency research! ✏️📊📖

[Daniel Willingham @DTWillingham]

Small study shows better comprehension of science passage via print compared to screen. Eye movements indicated different strategies used in reading each https://t.co/KmduKNUqul

[Pat McGann, MD @PTMcGann]

The COVID-19 pandemic made us appreciate our precious 🩸 supply

@acweyand and I suggest some concrete actions to prevent the next blood supply crisis:

➡️Removing LGBTQ+ donor restrictions 🏳️‍🌈

➡️Innovative donation strategies

➡️Transfusion stewardship

https://t.co/eVswDNaR75

[PyruvateKinaseDef @PyruvateKinaseD]

@MerandaCF @VertexPharma @CF_Foundation Nice to see folks speaking up about the importance of transparency!

[Pyruvate Kinase Deficiency International Alliance @2021PKDF]

Juneteenth is a day to reflect on both bondage and freedom — a day of both pain and purpose. It is, in equal measure, a remembrance of both the long, hard night of slavery and subjugation, as well as a celebration of the promise of a brighter morning to come. #juneteenth2022