How can shared experiences shape better care for people living with PKD?
Explore the interactive report of PKD International’s Global Members Meeting in Leuven: 11 chapters sharing patient perspectives on care, research and life with PKD.
www.pkdinternational.org/news-and-eve...
#ADPKD #ARPKD
Explore the interactive report of PKD International’s Global Members Meeting in Leuven: 11 chapters sharing patient perspectives on care, research and life with PKD.
www.pkdinternational.org/news-and-eve...
#ADPKD #ARPKD
Leuven 2026: Research and Patient Voices
Research advances raise new choices for people living with PKD.
www.pkdinternational.org
October 29, 2026 at 8:48 AM
How can shared experiences shape better care for people living with PKD?
Explore the interactive report of PKD International’s Global Members Meeting in Leuven: 11 chapters sharing patient perspectives on care, research and life with PKD.
www.pkdinternational.org/news-and-eve...
#ADPKD #ARPKD
Explore the interactive report of PKD International’s Global Members Meeting in Leuven: 11 chapters sharing patient perspectives on care, research and life with PKD.
www.pkdinternational.org/news-and-eve...
#ADPKD #ARPKD
Structural modelling predicts that fibrocystin destabilisation is a pathogenic cause of ARPKD https://www.biorxiv.org/content/10.64898/2026.10.19.758525v1
October 20, 2026 at 10:30 PM
Structural modelling predicts that fibrocystin destabilisation is a pathogenic cause of ARPKD https://www.biorxiv.org/content/10.64898/2026.10.19.758525v1
Structural modelling predicts that fibrocystin destabilisation is a pathogenic cause of ARPKD https://www.biorxiv.org/content/10.64898/2026.10.19.758525v1
October 20, 2026 at 10:30 PM
Structural modelling predicts that fibrocystin destabilisation is a pathogenic cause of ARPKD https://www.biorxiv.org/content/10.64898/2026.10.19.758525v1
Even with the best medical care, about 1 in 5 babies diagnosed with severe ARPKD before birth do not survive past infancy. In many cases, this is due to serious breathing problems caused by underdeveloped lungs and enlarged kidneys putting pressure on the chest.
October 15, 2026 at 6:15 PM
Even with the best medical care, about 1 in 5 babies diagnosed with severe ARPKD before birth do not survive past infancy. In many cases, this is due to serious breathing problems caused by underdeveloped lungs and enlarged kidneys putting pressure on the chest.
If you've experienced the unimaginable loss of a baby with ARPKD, please know that you don’t have to navigate this experience alone. Appendix B of the PKD Foundation’s ARPKD Patient Handbook includes resources that may be helpful to families following a diagnosis or loss.
October 15, 2026 at 6:15 PM
If you've experienced the unimaginable loss of a baby with ARPKD, please know that you don’t have to navigate this experience alone. Appendix B of the PKD Foundation’s ARPKD Patient Handbook includes resources that may be helpful to families following a diagnosis or loss.
Today, on National Pregnancy and Infant Loss Remembrance Day, we recognize the babies and families affected by ARPKD, a rare genetic disorder that occurs in approximately 1 in 20,000 children.
October 15, 2026 at 6:15 PM
Today, on National Pregnancy and Infant Loss Remembrance Day, we recognize the babies and families affected by ARPKD, a rare genetic disorder that occurs in approximately 1 in 20,000 children.
Adult-Onset DZIP1L Mutation–Related ARPKD Mimicking Medullary Nephrocalcinosis - Kidney International Case Reports www.kicasereports.org/article/S311...
From the June issue
From the June issue
Adult-Onset DZIP1L Mutation–Related ARPKD Mimicking Medullary Nephrocalcinosis
Autosomal recessive polycystic kidney disease (ARPKD) is a rare inherited cystic disorder
of the kidney. Here we report on a case of a lesser-known mutation causing ARPKD who
presented with medullary ...
www.kicasereports.org
October 9, 2026 at 10:34 AM
Adult-Onset DZIP1L Mutation–Related ARPKD Mimicking Medullary Nephrocalcinosis - Kidney International Case Reports www.kicasereports.org/article/S311...
From the June issue
From the June issue
🧵 (4/4) Because understanding the condition is an important step towards feeling more informed, prepared and empowered.
#PKDInternational #PKD #ADPKD #ARPKD #PKDAwareness #KidneyHealth #PatientEducation #PKDCommunity
#PKDInternational #PKD #ADPKD #ARPKD #PKDAwareness #KidneyHealth #PatientEducation #PKDCommunity
October 8, 2026 at 10:02 AM
🧵 (4/4) Because understanding the condition is an important step towards feeling more informed, prepared and empowered.
#PKDInternational #PKD #ADPKD #ARPKD #PKDAwareness #KidneyHealth #PatientEducation #PKDCommunity
#PKDInternational #PKD #ADPKD #ARPKD #PKDAwareness #KidneyHealth #PatientEducation #PKDCommunity
The PKD Foundation has awarded a $240,000 grant to USC researcher Zhongwei Li , Ph.D. to study autosomal recessive polycystic kidney disease (ARPKD).
👉https://stemcell.keck.usc.edu/pkd-foundation-provides-support-for-kidney-disease-research-by-zhongwei-li/
👉https://stemcell.keck.usc.edu/pkd-foundation-provides-support-for-kidney-disease-research-by-zhongwei-li/
September 30, 2026 at 3:27 PM
The PKD Foundation has awarded a $240,000 grant to USC researcher Zhongwei Li , Ph.D. to study autosomal recessive polycystic kidney disease (ARPKD).
👉https://stemcell.keck.usc.edu/pkd-foundation-provides-support-for-kidney-disease-research-by-zhongwei-li/
👉https://stemcell.keck.usc.edu/pkd-foundation-provides-support-for-kidney-disease-research-by-zhongwei-li/
His team will use lab-grown kidney tissue to better understand ARPKD and test potential new treatments, with the goal of improving care for families affected. You may have seen Dr. Li featured in our most recent research spotlight!
September 30, 2026 at 3:27 PM
His team will use lab-grown kidney tissue to better understand ARPKD and test potential new treatments, with the goal of improving care for families affected. You may have seen Dr. Li featured in our most recent research spotlight!
Can #StemCell based organoids and assembloids finally give scientists a real model for kidney disease? Zhongwei Li, PhD at USC Stem Cell just got a $240,000 PKD Foundation grant to find out. https://bit.ly/3Vh8AQg
📸 Carrie Zhang/Li Lab/USC Stem Cell
📸 Carrie Zhang/Li Lab/USC Stem Cell
September 25, 2026 at 10:34 PM
Can #StemCell based organoids and assembloids finally give scientists a real model for kidney disease? Zhongwei Li, PhD at USC Stem Cell just got a $240,000 PKD Foundation grant to find out. https://bit.ly/3Vh8AQg
📸 Carrie Zhang/Li Lab/USC Stem Cell
📸 Carrie Zhang/Li Lab/USC Stem Cell
🧵 (4/7) In our new article, we reflect on what the meeting means for people living with ADPKD and ARPKD. Research across different conditions can reveal shared questions and open opportunities for collaboration, while recognising that each disease has its own course and challenges.
TheRaCil Annual Meeting 2026: Key Insights for the PKD Community
Joomla! - the dynamic portal engine and content management system
pkdinternational.org
September 24, 2026 at 12:57 PM
🧵 (4/7) In our new article, we reflect on what the meeting means for people living with ADPKD and ARPKD. Research across different conditions can reveal shared questions and open opportunities for collaboration, while recognising that each disease has its own course and challenges.
Excited to be part of the TEDDY Conference today, where I’ll be presenting our latest findings on AI and autosomal recessive polycystic kidney disease (ARPKD), recently published in Computers in Biology and Medicine
pubmed.ncbi.nlm.nih.gov/41453266/
#ARPKD
#RenalResearch
#uniba
#dbba
#euroseed
pubmed.ncbi.nlm.nih.gov/41453266/
#ARPKD
#RenalResearch
#uniba
#dbba
#euroseed
September 19, 2026 at 11:17 AM
Excited to be part of the TEDDY Conference today, where I’ll be presenting our latest findings on AI and autosomal recessive polycystic kidney disease (ARPKD), recently published in Computers in Biology and Medicine
pubmed.ncbi.nlm.nih.gov/41453266/
#ARPKD
#RenalResearch
#uniba
#dbba
#euroseed
pubmed.ncbi.nlm.nih.gov/41453266/
#ARPKD
#RenalResearch
#uniba
#dbba
#euroseed
By creating a common framework for how PKD research data is collected and organized, the updated standard will make it easier for researchers around the world to share, compare, and reuse data. It will also expand to include ARPKD for the first time.
September 4, 2026 at 3:13 PM
By creating a common framework for how PKD research data is collected and organized, the updated standard will make it easier for researchers around the world to share, compare, and reuse data. It will also expand to include ARPKD for the first time.
Today is Polycystic Kidney Disease Awareness Day.
Dr Jennifer Chandler has been awarded a £98,000 PKD research project to test a new treatment for children with autosomal recessive polycystic kidney disease (ARPKD) in human kidney cells.
https://bit.ly/3SLlXHr
Dr Jennifer Chandler has been awarded a £98,000 PKD research project to test a new treatment for children with autosomal recessive polycystic kidney disease (ARPKD) in human kidney cells.
https://bit.ly/3SLlXHr
Testing a new treatment for childhood polycystic kidney disease - Kidney Research UK
Dr Jennifer Chandler is testing a new treatment for children with autosomal recessive polycystic kidney disease in human kidney cells.
bit.ly
September 4, 2026 at 10:18 AM
Today is Polycystic Kidney Disease Awareness Day.
Dr Jennifer Chandler has been awarded a £98,000 PKD research project to test a new treatment for children with autosomal recessive polycystic kidney disease (ARPKD) in human kidney cells.
https://bit.ly/3SLlXHr
Dr Jennifer Chandler has been awarded a £98,000 PKD research project to test a new treatment for children with autosomal recessive polycystic kidney disease (ARPKD) in human kidney cells.
https://bit.ly/3SLlXHr
🧵(2/5)🔬 From 4:00 to 8:00 PM, experts will share updates on current studies, emerging therapeutic approaches and patient care, with a focus on ADPKD, ARPKD, PLD and other cystic kidney diseases.
September 3, 2026 at 8:29 AM
🧵(2/5)🔬 From 4:00 to 8:00 PM, experts will share updates on current studies, emerging therapeutic approaches and patient care, with a focus on ADPKD, ARPKD, PLD and other cystic kidney diseases.
🧵 (4/4)🤝 An opportunity to share experiences, better understand the condition, and feel less alone throughout the journey.
🗓️ Saturday, 29 August 2026, 6:00 PM
📍 Dresden – venue to be confirmed
📩 Registration: via Easy Verein or by email at anmeldung@pkdcure.de
#ADPKD #ARPKD #PKDCommunity #Dresden
🗓️ Saturday, 29 August 2026, 6:00 PM
📍 Dresden – venue to be confirmed
📩 Registration: via Easy Verein or by email at anmeldung@pkdcure.de
#ADPKD #ARPKD #PKDCommunity #Dresden
August 21, 2026 at 7:50 AM
🧵 (4/4)🤝 An opportunity to share experiences, better understand the condition, and feel less alone throughout the journey.
🗓️ Saturday, 29 August 2026, 6:00 PM
📍 Dresden – venue to be confirmed
📩 Registration: via Easy Verein or by email at anmeldung@pkdcure.de
#ADPKD #ARPKD #PKDCommunity #Dresden
🗓️ Saturday, 29 August 2026, 6:00 PM
📍 Dresden – venue to be confirmed
📩 Registration: via Easy Verein or by email at anmeldung@pkdcure.de
#ADPKD #ARPKD #PKDCommunity #Dresden
Mengenal “Musuh Dalam Selimut” pada Ginjal: Mengupas Tuntas ADPKD dan ARPKD
Penyakit Ginjal Polikistik (PKD) adalah kelainan genetik yang menyebabkan pertumbuhan kista berisi cairan di ginjal, mengganggu fungsinya. Terdapat dua varian utama: ADPKD, yang muncul di usia dewasa, dan ARPKD, yang…
Penyakit Ginjal Polikistik (PKD) adalah kelainan genetik yang menyebabkan pertumbuhan kista berisi cairan di ginjal, mengganggu fungsinya. Terdapat dua varian utama: ADPKD, yang muncul di usia dewasa, dan ARPKD, yang…
Mengenal “Musuh Dalam Selimut” pada Ginjal: Mengupas Tuntas ADPKD dan ARPKD
Penyakit Ginjal Polikistik (PKD) adalah kelainan genetik yang menyebabkan pertumbuhan kista berisi cairan di ginjal, mengganggu fungsinya. Terdapat dua varian utama: ADPKD, yang muncul di usia dewasa, dan ARPKD, yang muncul sejak bayi. Diagnosis melibatkan imaging medis dan genetik, dan perawatan fokus pada manajemen gejala serta pengawasan berkala.
legawa.com
January 7, 2026 at 10:20 AM
Mengenal “Musuh Dalam Selimut” pada Ginjal: Mengupas Tuntas ADPKD dan ARPKD
Penyakit Ginjal Polikistik (PKD) adalah kelainan genetik yang menyebabkan pertumbuhan kista berisi cairan di ginjal, mengganggu fungsinya. Terdapat dua varian utama: ADPKD, yang muncul di usia dewasa, dan ARPKD, yang…
Penyakit Ginjal Polikistik (PKD) adalah kelainan genetik yang menyebabkan pertumbuhan kista berisi cairan di ginjal, mengganggu fungsinya. Terdapat dua varian utama: ADPKD, yang muncul di usia dewasa, dan ARPKD, yang…
🧵 (5/5) 🌍 Small everyday actions can make a meaningful difference during the summer. Always follow the advice of your healthcare team regarding hydration, dialysis, and kidney care.
#PKDInternational #ADPKD #ARPKD #AIRP
#PKDInternational #ADPKD #ARPKD #AIRP
July 21, 2026 at 1:24 PM
🧵 (5/5) 🌍 Small everyday actions can make a meaningful difference during the summer. Always follow the advice of your healthcare team regarding hydration, dialysis, and kidney care.
#PKDInternational #ADPKD #ARPKD #AIRP
#PKDInternational #ADPKD #ARPKD #AIRP
🧵 (2/5) Even a few simple precautions can help you stay more comfortable and safe during the warmer months.
Based on recommendations shared by AIRP - Associazione Italiana Rene Policistico onlus - ADPKD ARPKD, here are four practical tips:
Based on recommendations shared by AIRP - Associazione Italiana Rene Policistico onlus - ADPKD ARPKD, here are four practical tips:
July 21, 2026 at 1:24 PM
🧵 (2/5) Even a few simple precautions can help you stay more comfortable and safe during the warmer months.
Based on recommendations shared by AIRP - Associazione Italiana Rene Policistico onlus - ADPKD ARPKD, here are four practical tips:
Based on recommendations shared by AIRP - Associazione Italiana Rene Policistico onlus - ADPKD ARPKD, here are four practical tips:
🧵(6/6) This joint celebratory event brings together patient advocates, clinicians, and researchers in one place to strengthen dialogue and collaboration across the global PKD community.
#StrongerTogether #Advancing #PKDresearch
#ADPKD #ARPKD #ADPedKD #PatientAdvocacy #RareDisease #Nephrology
#StrongerTogether #Advancing #PKDresearch
#ADPKD #ARPKD #ADPedKD #PatientAdvocacy #RareDisease #Nephrology
July 14, 2026 at 9:36 AM
🧵(6/6) This joint celebratory event brings together patient advocates, clinicians, and researchers in one place to strengthen dialogue and collaboration across the global PKD community.
#StrongerTogether #Advancing #PKDresearch
#ADPKD #ARPKD #ADPedKD #PatientAdvocacy #RareDisease #Nephrology
#StrongerTogether #Advancing #PKDresearch
#ADPKD #ARPKD #ADPedKD #PatientAdvocacy #RareDisease #Nephrology
🧵 (6/6) This joint celebratory event brings together patient advocates, clinicians, and researchers in one place to strengthen dialogue and collaboration across the global PKD community.
#StrongerTogether #Advancing #PKDresearch
#ADPKD #ARPKD #ADPedKD #PatientAdvocacy #RareDisease #Nephrology
#StrongerTogether #Advancing #PKDresearch
#ADPKD #ARPKD #ADPedKD #PatientAdvocacy #RareDisease #Nephrology
July 14, 2026 at 8:35 AM
🧵 (6/6) This joint celebratory event brings together patient advocates, clinicians, and researchers in one place to strengthen dialogue and collaboration across the global PKD community.
#StrongerTogether #Advancing #PKDresearch
#ADPKD #ARPKD #ADPedKD #PatientAdvocacy #RareDisease #Nephrology
#StrongerTogether #Advancing #PKDresearch
#ADPKD #ARPKD #ADPedKD #PatientAdvocacy #RareDisease #Nephrology
🧵 (6/6) This joint celebratory event brings together patient advocates, clinicians, and researchers in one place to strengthen dialogue and collaboration across the global PKD community.
#StrongerTogether #Advancing #PKDresearch
#ADPKD #ARPKD #ADPedKD #PatientAdvocacy #RareDisease #Nephrology
#StrongerTogether #Advancing #PKDresearch
#ADPKD #ARPKD #ADPedKD #PatientAdvocacy #RareDisease #Nephrology
July 14, 2026 at 8:29 AM
🧵 (6/6) This joint celebratory event brings together patient advocates, clinicians, and researchers in one place to strengthen dialogue and collaboration across the global PKD community.
#StrongerTogether #Advancing #PKDresearch
#ADPKD #ARPKD #ADPedKD #PatientAdvocacy #RareDisease #Nephrology
#StrongerTogether #Advancing #PKDresearch
#ADPKD #ARPKD #ADPedKD #PatientAdvocacy #RareDisease #Nephrology
2/4 The PKD Foundation is now accepting applications for its 2026 Research Grant Program, supporting research on ADPKD and ARPKD with the goal of advancing our understanding of the disease, accelerating the development of new therapeutic strategies, and improving outcomes for people living with PKD.
pkdcure.org
July 10, 2026 at 9:55 AM
2/4 The PKD Foundation is now accepting applications for its 2026 Research Grant Program, supporting research on ADPKD and ARPKD with the goal of advancing our understanding of the disease, accelerating the development of new therapeutic strategies, and improving outcomes for people living with PKD.