Not sure how to get involved in the PEAK Registry? Here's the cheat sheet link for sign-up and a cheat sheet! peakregistry.com/?publicpage=pa… #pyrvuatekinasedeficiency #pkdeficiency #PKD #rareanemia #peakregistry

#AgingwithPKD from the perspective of those living it! For those wondering what it's like, you'll want to make sure to check this out! #PKdeficiency #pyruvatekinasedeficiency #PKD #rareanemia #bridginglivesPKD

It's not to late to register for the 2nd International #PyruvateKinaseDeficiency Conference! Registration closes June 20, 2024, so hurry before this opportunity ends. ow.ly/4Oec50S94Vx #Rareanemia #PKD #pkdeficiency #blooddisease #blooddisorder #geneticanemia

Did you know 72% of all #rarediseases are genetic like #pkdeficiency? #PKD is caused by a recessive PKLR gene that doesn't work properly. #RareDiseaseDay2024 #pyruvatekinasedeficiency #rareanemia

Join in the sock fun for #Rarediseaseday on February 29, 2024! #pyruvatekinasedeficiency #rareanemia #pkdeficiency #showyourstripes

One in ten people live with a #raredisease, making it not so unusual after all. Resources to help people cope with #raredisease are more available than ever before. 🦓 #pkdeficiency #pyruvatekinasedeficiency #rareanemia

Follow Pyruvate Kinase Deficiency Foundation and Thrive w/ Pyruvate Kinase Deficiency Organization for messages about #pkdeficiency and #raredisease month! Rare Disease Day is Feb 29th and this year we have a great surprise in store! 🦓 #pyruvatekinasedeficiency #rareanemia #pkd

Jen is a grateful recipient of #blooddonations. As a teacher and person living with #pkdeficiency, Jen understands that importance of thanking those that give the gift of life. 👏👏 #NBDM2024 #NBDM #pyruvatekinasedeficiency #teacher #rareanemia #donateblood #gratitude

People with #pyruvatekinasedeficiency require blood transfusions to maintain life, and that percentage may be low. Be please consider donating blood! 🩸 #NBDM2024 #pkdeficiency #blooddisorder #raredisease #hemolyticanemia #rareanemia

#Fabhalta by Novartis gains #FDA approval as the first oral treatment for adults with #rareanemia paroxysmal nocturnal hemoglobinuria (#PNH). Positive APPLY-PNH study results show improved haemoglobin levels & decreased reliance on transfusions! 🔗 thalassaemia.org.cy/news/pharma-ne… 🎉

Upper plans States! Last call to join #ThrivewithPKD for #familytime in MN this Saturday, Oct 21, 2023. Register now for free tickets to an apple farm and weekend in the #TwinCities! ow.ly/EFYJ50PWPWe #pyruvatekinasedeficiency #PKD #raredisease #rareanemia

Are you a part of the rare disease community? Join Global Genes' Rare Advocacy Summit online for a fantastic opportunity to learn about the latest rare disease innovations & advocacy strategies to accelerate change. #rareanemia #raredisease ow.ly/noAK50PO8WR

The #pyruvatekinase enzyme is involved in the metabolic pathway of glycolysis. People with decreased amounts of the PK enzyme have less energy production. Their RBCs break causing fatigue & Fe overload. #pkdeficiency #ironoverload #rareanemia Image from StanfordMedicine

Listen to this podcast where Jill and Tamara explain what it's like to grow older living with #pkdeficiency, a chronic, #rareanemia. ow.ly/jHxV50OS6Mn #pyruvatekinasedeficiency #pkdfriendsforlife #pkd #rarebutnotalone #livedexperience #blooddisease #bloodcondition

Celebrating progress for the LGBTQ+ community 🌈: the #FDA has released new guidance that welcomes all blood donors, regardless of sexual orientation or gender identity! 🩸 #LGBTQ #BloodDonation #WBDM #Pridemonth #pyruvatekinasedeficiency #PKdeficiency #rareanemia

#PrideMonth represents the efforts of millions of men and women forwarding the human rights agenda, including healthcare access for all people. We celebrate the #LGBTQIA+ members in the #PKdeficiency community! #PKdeficiency #rareanemia #LGBTQIA+

The #EuropeanHematologyAssociation's 2023 Congress is June 8-15th. Abstracts related to #pkdeficiency have been compiled by #Thrivewithpkd for easy access. Just download here: thrivewithpkd.org #pyruvatekinasedeficiency #rareanemia #hematology #conference #EHA2023

Whether newly diagnosed with #PKdeficiency, or living with it for life, #ThrivewithPKD is a nonprofit offering support to people and families living with this rare condition. You can lean on us! #pyruvatekinasedeficiency #rareanemia #bloodcondition #blooddisorder