The PKDIA is a national nonprofit organization whose mission is to enhance the quality of life for patients and their families.
Joined September 2020
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***TODAY IS PKD DAY**
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 better understand why blood donation is so crucial for individuals battling PKD. #PKDDay
***TODAY IS PKD DAY**
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.
Registration is open for the 2nd International PK Deficiency Conference, "Bridging Lives with PKD!"
Register here: cvent.me/k03xGQ
Travel assistance: docs.google.com/forms/d/e/1F…
#pyruvatekinasedeficiency #pkdeficiency #pkdconference #rareanemia #registernow #rarebutnotalone
We need your help finding sponsors for our Second International PKD Conference! If you know of any potential sponsors or are willing to assist in reaching out to businesses and organizations, please let us know. Donate through this link: lnkd.in/gCnsJZAB
#PKDConference
The zebra is the mascot for rare disease patients because, in medicine, zebras represent uncommon answers. On February 29, #RareDiseaseDay, post a selfie with the hashtag #ShowYourStripes to share your rare story with others! #PKdeficiency #rareanemia #pyruvatekinasedeficiency
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 #pkdeficiency #RareDiseaseDay
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. #BridgingLiveswithPKD #ConnectlearnPKDeficiency #peoplewithpyruvatekinasedeficiency #PKDF #PyruvateKinaseDeficiency
Your financial support will allow you to become a vital part of a movement that connects, supports, and educates, creating a lasting impact on the PKD community. Donate here 👇👇👇donorbox.org/giving-tuesday-…
#BridgingLiveswithPKD #ConnectPKD #SharePKDeficiency #LearningPKDeficiency
This Giving Tuesday, With our upcoming PKD conference in summer 2024 themed "Bridging Lives with PKD: Connecting, Sharing, and Learning," your support can make a difference.
#BridgingLiveswithPKD #ConnectPKD #SharePKD #LearningPKD #PKDF Donate here 👇👇👇
donorbox.org/giving-tuesday-…
As we gather with family and friends to give thanks during this special season, the PKD Foundation extends its deepest gratitude to you. #PKDeficiencycommunity #PKDF #PyruvateKinaseDeficiency #pkdeficiencyawareness #peoplewithpyruvatekinasedeficiency #thanksgiving2023
Notably, throughout this clinical evaluation, the safety profile of RP-L301 has remained favorable, further reinforcing its potential as a groundbreaking treatment for PKD patients. #PKDeficiency
Among the noteworthy benefits observed in the Gene Therapy are hemoglobin normalization, a significant reduction in the need for blood transfusions, decreased hemolysis, and an improvement in the overall quality of life. #PKDeficiency
The pediatric cohort's progress is particularly encouraging, showing enhanced hemoglobin levels relative to their pre-treatment baseline, although the follow-up period was relatively shorter at six months. #PKDeficiency
Clinical data strongly suggest that RP-L301 holds significant promise as a treatment option for individuals afflicted with severe Pyruvate Kinase Deficiency (PKD), including those who have previously found little benefit from existing therapies such as mitapivat. #PKDeficiency
Pyruvate Kinase Deficiency International Alliance retweeted
“Over the course of the years, we've been having ups and downs.”
During childhood, Jonathan endured periods of increased #PKdeficiency symptoms and medical issues. After many tests and much uncertainty, his parents found a doctor who had experience with the #raredisease.
As the theme of World Mental Health Day highlights, ‘mental health is a universal human right.’ Let's talk about mental health and show everyone that mental health matters. #MentalHealthDay2023 #PKDeficiency #MentalHealthMatters
Achieving health equity is a multifaceted challenge because it intersects with race, socioeconomic status, class, and historical contexts. The causes of health inequity are deeply rooted in our society. Join our team in the pursuit of solutions. [email protected] #VolunteersNeeded
As we enjoy the fireworks, gatherings, and festivities, let us remember the strength and resilience that unites us as a community. May this Independence Day be a symbol of unity, compassion, and support for one another. Wishing you a safe, joyful, and memorable 4th of July! #PKD
