International Society of Glomerular Disease

The ISGD team is enormously grateful to everyone who attended the #ParasolProject public scientific workshop this week, as well as the project team led by PI Laura Mariani, the top-notch biostats group led by Abigail Smith who went above and beyond to analyze the *largest ever collection* of FSGS patient-level data, patient and clinician panelists, and especially our regulatory colleagues at FDA for their insights and participation. It has been our privilege to co-manage this project and it doesn’t end here. Stay tuned for a meeting summary this week and save the date for an additional presentation at ASN Kidney Week on the 25th!

DEADLINE EXTENDED to Friday, 25 October! RDI has launched a survey to identify centers and networks providing care for rare diseases across various countries. We aim to map available expertise and understand how care is organized, whether through hospitals, specialized centers, or departments. 🔎 We are looking to identify: 📍 Formally recognized care-providing centers for rare diseases, such as those designated by government or medical organizations 📍 Centers/units/departments dedicated to rare diseases, even if not formally recognized 📍 International collaborations and networks involving rare disease experts or care-providing centers The survey takes less than 5 minutes and responses are anonymous. You can also choose to share your email to receive updates on the results and the WHO Global Network for Rare Diseases project. This is a public survey, share it within your network and contacts ! 🔗 ➡ Find the survey here: https://lnkd.in/dXwpj8H9 📩 Questions? Contact Sara Brambilla, Global Programme Junior Manager, at sara.brambilla@rarediseasesint.org

The PARASOL Scientific Workshop was a fascinating two days of data, discussion, and commitment to better options for FSGS. Thank you to everyone who participated, and we will see you next week at ASN Kidney Week! 🏖️

Join us online or in person at our "Rare Kidney Disease" conference in Palm Springs during the holiday season! Register today and secure your spot. https://lnkd.in/gpSEEjnP

PARASOL news from the Scientific Workshop with FDA. Stay tuned for more updates at #KidneyWk2024! (translational session at 4:30 Friday 10/25) #FSGS #KidneyHealth #ResearchRevolution https://lnkd.in/eVFjTDgC NephCure National Kidney Foundation American Society of Nephrology

We will #hire in 2025! Know anyone who might be interested?

#KidneyWeek 2024 abstracts are now available, featuring groundbreaking research and new late-breaking clinical trial titles. With Kidney Week less than two weeks away, get ready to dive into the latest innovations in nephrology. Stay ahead of the curve by exploring insights that are shaping the future of kidney care. 👉 Access the abstracts here: https://lnkd.in/eeay3tZs #nephrology #kidneycare #research #KidneyWeek2024 #clinicaltrials #innovation

A robust clinical trial pipeline of potential APOL1 kidney disease drugs proves that precision medicine tools are unearthing bench-to-bedside treatment options for people with kidney diseases. Join the Kidney Health Initiative (KHI) and leaders from the Kidney Precision Medicine Project (KPMP) at a virtual webinar presenting the latest advances in kidney medicine with an open and moderated discussion. The webinar will be on Tuesday, October 15, 2024, at 12:00 p.m. EDT with advanced registration at https://lnkd.in/eyhPfVCU Matthias Kretzler, Jonathan Himmelfarb, Glenda V. Roberts, Ashveena Dighe

The PARASOL Project meets again — this time in Washington, DC — to advance the understanding and use of proteinuria and eGFR-based endpoints as surrogate endpoints for accelerated and traditional approval in FSGS. PARASOL stands for 'Proteinuria and GFR as Clinical Trial Endpoints in Focal Segmental Glomerulosclerosis,' and the goal of the meeting is to make sure there is an endpoint for FSGS clinical trials. An endpoint is a measurable outcome in a clinical trial that helps determine the safety and efficacy of a treatment. “When this project was initially scoped, it was about two and a half years worth of work, and that was clearly not going to be what we need. So the community came together and we got this down to 11 months! It took an incredible amount of work,” NephCure CEO Josh Tarnoff said. This global initiative looks at the data from 28 databases across the world. This scale of data sharing and analysis is largely because the need is so great— there are currently no approved therapies for FSGS. “The goal is to give FDA confidence in the modeling to generate reliable and reassuring data, give sponsors incentives and motivation to continue FSGSS investment knowing there will be a feasible and reasonable regulatory path ahead…and most importantly, give patients the hope that studies will achieve new drug approvals,” NephCure Board Member and PARASOL meeting attendee, Barbara Gillespie, MD, FASN said. Today more than 80 researchers, biostatisticians, industry partners, government regulators, patient advocates, and nonprofit organizations are attending in person; with roughly 80 more attendees joining virtually. “I’m so proud of nephrology, we’ve all stepped up! We can accomplish so much together,” PARASOL Project Co-Chair, Dr. Laura Mariani said. NephCure is proudly partnering with the International Society of Glomerular Disease, National Kidney Foundation, Kidney Health Initiative, and the U.S. Food and Drug Administration (FDA) to sponsor the PARASOL Project. The PARASOL Project meeting continues tomorrow, October 8, 2024, followed by broader dissemination at American Society of Nephrology Kidney Week later this month in San Diego. 

The KDIGO Controversies Conference on APOL1 Kidney Disease plenary presentations are now available. Watch the recordings: https://lnkd.in/e2nyR38a You can download the presentations and additional resources on the conference website: https://lnkd.in/ejydQmwi The conference, co-chaired by Dr. Akinlolu Ojo (United States) and Dr. Ifeoma Ulasi (Nigeria), was held in Accra, Ghana, in April 2024. Plenary topics included APOL1 pathophysiology, epidemiology, diagnostics, and therapeutics, the ethics of genetic testing, and an incredible patient and caregiver panel discussion. #APOL1 #kidneydisease #KidneyHealth #genetics