Shrugging off an earlier phase 3 disappointment, #Travere’s #Filspari has become the first FDA-approved treatment for #rarekidneydisease #focalsegmentalglomerulosclerosis (FSGS).
pharmaphorum.com/news/travere...
Support by grants from Fondazione Telethon, the Italian Ministry of Health, and the Italian Ministry of University and Research (Investment PE8 –Project Age-It: “Ageing Well in an Ageing Society”, National Recovery and Resilience Plan).
#ADTKD #UMOD #calorierestriction #RareKidneyDisease
🧬 Rare kidney disease causes almost all childhood kidney failure, yet many children face delays accessing new therapies.
RaDaR will soon launch a CKD of unknown aetiology Rare Disease Group to help more children join future clinical trials.
Watch this space!
#RareKidneyDisease #CKD #KidneyDisease
🧬 Rare kidney disease causes almost all childhood kidney failure, yet many children face delays accessing new therapies.
In 2026, RaDaR will launch a CKD of unknown aetiology Rare Disease Group to help more children join future clinical trials.
#RareKidneyDisease
🧭 Explore the ISN Rare Kidney Diseases Toolkit — a curated resource with disease-specific tools highlighting the burden, gaps, and needs in rare kidney conditions.
🆕 ADPKD overview, PKD quiz, X Space & Tweetorials ➡️ http://lite.spr.ly/6
Supported by Otsuka.
#RareKidneyDisease #ADPKD
🧭 Explore the ISN Rare Kidney Diseases Toolkit — a curated resource with disease-specific tools highlighting the burden, gaps, and needs in rare kidney conditions.
🆕 ADPKD overview, PKD quiz, X Space & Tweetorials ➡️ http://lite.spr.ly/6
Supported by Otsuka.
#RareKidneyDisease #ADPKD
📝ERKReg Basic Training Session
On Monday, August 25th, we host our ERKReg training session again📚.
40 min - Basic information about ERKReg.
20 min - Questions and answers.
🔗Register right here: www.erknet.org/databases/er...
#ERKucation #rarekidneydisease #erknet #training #kidneydisease
Living with a #rarekidneydisease often means navigating a maze of late diagnoses, scarce treatment options, and daily symptom management. When #dialysis enters the picture, it can feel like one more heavy layer on an already complex journey.
More at www.rare360.life/post/managin...
#c3g #MPGN
📝ERKReg Basic Training Session
On Thursday, July 31st, we host our ERKReg training session again📚.
40 min - Basic information about ERKReg.
20 min - Questions and answers.
🔗Register right here: www.erknet.org/databases/er...
#ERKucation #rarekidneydisease #erknet #training #kidneydisease
🎥 New RaDaR data on #AlportSyndrome
✅ 1175 patients
✅Key for understanding disease progression
✅ Informs future trial design
RaDaR's Danny Gale discusses the most detailed AS analysis yet.
🎥Watch the HCP Live News interview: ow.ly/xo7150WbFcY
#RareKidneyDisease
FYI: LucidQuest Views >>> Rare Diseases Weekly News – June 12th 2025 #News #RareKidneyDisease #Empaveli #Mavorixafor Comment below!
📝ERKReg Basic Training Session
On Monday, June 30th, we host our ERKReg training session again📚.
40 min - Basic information about ERKReg.
20 min - Questions and answers.
🔗Register right here: www.erknet.org/databases/er...
#ERKucation #rarekidneydisease #erknet #training #kidneydisease
🧬 FSGS affects far too many in silence. Nearly 60% of cases impact Black Americans.
🎙️ Today, we’re talking real stories, real policy, real change.
🕛 12 PM ET
📲 Register now: bit.ly/NMQF0613
#FSGS #RareKidneyDisease #BlackHealthMatters #KidneyEquity #NMQF
ICYMI: LucidQuest Views >>> Rare Diseases Weekly News – June 12th 2025 #News #RareKidneyDisease #Empaveli #Mavorixafor Comment below!
LucidQuest Views >>> Rare Diseases Weekly News – June 12th 2025 #News #RareKidneyDisease #Empaveli #Mavorixafor Comment below!
🧬 FSGS affects far too many in silence. Nearly 60% of cases impact Black Americans.
🎙️ On Friday, June 13th, we’re talking real stories, real policy, real change.
🕛 12 PM ET
📲 Register: bit.ly/NMQF0613
#FSGS #RareKidneyDisease #BlackHealthMatters #KidneyEquity #NMQF
🏥 Perfect for:
• Academic medical centers
• Nephrology Clinics
• Healthcare institutions serving rare kidney disease populations
📅 Timeline: Pre-applications open NOW | Framework release Fall 2025
#RareKidneyDisease #GlomerularDisease #CentersOfExcellence #Nephrology #PatientCare
🧬 FSGS affects far too many in silence. Nearly 60% of cases impact Black Americans.
🎙️ On June 13, we’re talking real stories, real policy, real change.
🕛 12 PM ET
📲 Register: bit.ly/NMQF0613
#FSGS #RareKidneyDisease #BlackHealthMatters #KidneyEquity #NMQF
Do you want to transform the future of #paediatric or #RareKidneyDisease?
We are offering funding opportunities for researchers dedicated to advancing our understanding, diagnosis, or treatment of paediatric and rare kidney conditions
Find our more and apply here: bit.ly/4jisFg1
📝 ERKReg Basic Training
Join us on Wednesday, May 7th for our next ERKReg training! 📚
🔹 40 min – Basics: ERKReg overview, patient entry, key guidelines.
🔹 20 min – Q&A: Ask live or submit questions in advance.
📩 Register here: www.erknet.org/databases/er...
#ERKucation #rarekidneydisease
📝 ERKReg Basic Training
Join us on Wednesday, April 9th for our next ERKReg training! 📚
🔹 40 min – Basics: ERKReg overview, patient entry, key guidelines.
🔹 20 min – Q&A: Ask live or submit questions in advance.
📩 Register here: www.erknet.org/databases/er...
#ERKucation #rarekidneydisease
🛋️ In his latest column, Dr. Ajay Singh reviews the current landscape of rare kidney disease. #rarekidneydisease #kidneydisease #nephrology #nephsky
Did you know there are more than 150 unique types of rare kidney diseases? Each one has its own distinct challenges and effects on health, making the world of kidney health incredibly diverse and complex!
#kidneydisease #kidneyawareness #rarekidneydisease
📚Upcoming webinar!
Optimizing PD with a focus on Incodextrin
🗓️ Feb. 11th
⏰4-5 PM CET
👩⚕️Dagmara Borzych-Duzalka
✏️Register here: register.gotowebinar.com/register/803668607263054...
#ERKNet #Webinar #Rarekidneydisease #MedicalEducation #Icodextrin
Let’s break down nephrotic syndrome: a rare kidney disease that about 5 out of 100,000 children develop each year.
@kidneyomicsamps.bsky.social
#nephrology #genomics #kidneyomics #pediatrics #pediatricnephrology #nephroticsyndrome #rarekidneydisease
#MeetThePartners
🚨 @inserm.fr U1297 at I2MC leads the PICKED project, identifying biomarkers to transform care for pediatric kidney disease.
Goals:
✅ Personalized prenatal counselling
✅ Improved postnatal management
Advancing research for better outcomes! 🌟
#PICKEDProject #RareKidneyDisease
Why Should #RareDisease Patients and Caregivers Care to Participate in #MarketResearch Studies?
www.rare360.life/post/your-in...
#C3G
#C3GN
#ICMPGN
#lupus
#PNH
#rarekidneydisease
#chronickidneydisease
#ourlivesmatter
#nothingaboutuswithoutus
#livingRare
