Pyruvate Kinase Deficiency Foundation

🧸 Help Bring Comfort to Children with PK Deficiency! 🧸 We're collecting Squishmallows to distribute among children with Pyruvate Kinase Deficiency (PKD). These plush toys will be cuddly companions, offering comfort and solace to these brave kids during hospital stays, blood transfusions, treatments, surgeries, and recovery periods. PKD is a rare congenital hemolytic anemia, affecting 3.2 to 8.5 individuals per million in Western populations. In the USA and EU5 alone, an estimated 3,000 to 8,000 individuals of diverse races and backgrounds are affected. The primary treatment for PKD is regular blood transfusions. You can help by purchasing Squishmallows through our Amazon wish list or by making a large Squishmallows contribution. For more info, contact us at info@pkdf.org or visit our website at www.pkdf.org https://lnkd.in/eC73YwYM

***TODAY IS PKD DAY** On April 30, we celebrate and honor those who have impacted lives by donating blood for individuals with PKD. We want to express our deep gratitude for their contributions, highlighting the crucial role they play in improving quality of life. Let's come together to raise awareness and appreciation for their invaluable support. Individuals with Pyruvate Kinase Deficiency often rely on frequent blood transfusions, starting from infancy. April 30 marks the 120th day of the year, symbolizing the lifespan of a healthy red blood cell - 120 days. Additionally, the bone marrow produces a staggering 120 million red blood cells in just one minute. However, for those with PK Deficiency, red blood cells last only a fraction of that time, from a few days to 2-8 weeks. Are you curious about the vital impact of blood donation on the lives of those affected by Pyruvate Kinase Deficiency (PKD)? Join us in watching Spikey's video to gain a deeper understanding of why blood donation is so crucial for individuals battling PKD. #PKDDay #PKDAwareness #Spikey

***LAST CALL FOR TRAVEL ASSISTANCE*** As the registration for the PKD conference remains available, we urge you not to overlook the opportunity to seek Travel Assistance. TODAY MARKS THE FINAL DAY FOR APPLICATIONS. Join us in this empowering event. Here is the LINK: https://lnkd.in/dgPB7NH9

***Registration is open for the 2nd International PK Deficiency Conference, "Bridging Lives with PKD!"*** Please join Pyruvate Kinase Deficiency Foundation & Thrive with PK Deficiency Organization as they host this year's family conference for people and families with PKD in Bloomington, MN, July 14-16, 2024. We've removed as many barriers as possible to attending by: Making the conference free (no registration fee!) Providing complimentary accommodations three nights for domestic travelers and four nights for international travelers Providing complimentary breakfast and lunch on July 15th & 16th Providing a travel assistance grant for those needing it (grant deadline is April 17, 2024) This year's conference will focus on the recently released International Guidelines for Diagnosis and Treatment of PKD, iron chelation therapy, Pyrukynd, gene therapy, nutrition for people with PKD, and break-out sessions on hot topics. We thank our sponsors, Agios Pharmaceuticals and Rocket Pharmaceuticals, for helping make this conference possible! Register here:  https://cvent.me/k03xGQ. Travel assistance:  https://lnkd.in/dgPB7NH9 #pyruvatekinasedeficiency #pkdeficiency #pkdconference #rareanemia #registernow #rarebutnotalone 

We need your help finding sponsors for our Second International PKD Conference! Together, we can make a huge difference in the lives of those affected by Pyruvate Kinase Deficiency (PKD). If you know of any potential sponsors or are willing to assist in reaching out to businesses and organizations, please let us know. Your support is invaluable in making this event a success! Let's come together and bridge lives at the conference! You can also make direct donations through this link: https://lnkd.in/gCnsJZAB #PKDConference #sponsorshipopportunity #pyruvatekinasedeficiency #bridgingliveswithpkd #SponsorAFamily

The zebra is the mascot for rare disease patients because, in medicine, zebras represent uncommon answers. One out of every 10 Americans has a rare disease. On February 29, #RareDiseaseDay, post a selfie with the hashtag #ShowYourStripes to share your rare story with others! Make it fun by wearing stripes! #PKdeficiency #rareanemia #pyruvatekinasedeficiency

Save the Date! We are thrilled to announce that the Second International Pyruvate Kinase Deficiency (PKD) Conference is happening this July 2024! This year, we are excited to share that PKDF and Thrive with PKD are joining forces to unite our PKD community like never before! Mark your calendars and get ready to come together with families, researchers, and healthcare professionals from around the world to share knowledge, experiences, and support. Stay tuned for more details on registration, speakers, and exciting activities! Let's empower each other, raise awareness, and thrive together! #PKDConference2024 #PKDF #ThriveWithPKD #PKDCommunity #SaveTheDate #bridgingliveswithpkd

Save the Date! We are thrilled to announce that the Second International Pyruvate Kinase Deficiency (PKD) Conference is happening this July 2024! This year, we are excited to share that PKDF and Thrive with PKD are joining forces to unite our PKD community like never before! Mark your calendars and get ready to come together with families, researchers, and healthcare professionals from around the world to share knowledge, experiences, and support. Stay tuned for more details on registration, speakers, and exciting activities! Let's empower each other, raise awareness, and thrive together! #PKDConference2024 #PKDF #ThriveWithPKD #PKDCommunity #SaveTheDate #bridgingliveswithpkd

Chances are high that you know someone affected by #raredisease! # PK deficiency affects people of all backgrounds and is thought to have affected people of all backgrounds#pyruvatekinasedeficiency developed as protection against malaria. #rareanemias #hemolyticanemia #pyruvatekinasedeficiencyawareness #rarediseaseday2024

As the festive season unfolds, the Pyruvate Kinase Deficiency Foundation (PKDF) extends you and your loved ones' warm wishes of joy, peace, and good health. May this holiday season be filled with laughter, love, and togetherness. As we reflect on the past year's achievements and anticipate the promising future, your support and engagement continue to inspire us. Thank you for being an integral part of the PKD community. Happy holidays, and here's to a bright and hopeful New Year! #BridgingLiveswithPKD #ConnectPKDeficiency #LearningPKDeficiency #PKDeficiencycommunity #pkdeficiencyawareness #peoplewithpyruvatekinasedeficiency #PKDF #pyruvatekinasedeficiencyawareness #PyruvateKinaseDeficiency #Rareanemias