Learn hands on; what goes wrong inside the kidneys filtering units when a person has Nephrotic Syndrome.
A big thanks to Ella and Ethan for putting this experiment together for us! You can see more of Ella’s amazing science tutorials on her YouTube channel Sci Files!
Thanks to a significant funding contribution, we’re proud to announce that the NephCure Accelerating Cures Institute (NACI) Care Network is expanding. An investment from Pfizer’s Centers for Therapeutic Innovation (PFE) and Retrophin (RTRX) will help grow the network from 8 sites to 30 sites worldwide. For patients living with Nephrotic Syndrome, more NACI sites means greater access to specialized care and trial opportunities specific to their unique kidney condition. Equally important, a more robust Network gives families across the globe a hub for community building and support at their individual care sites.
NephCure Accelerating Cures Institute Global Trials Network
The NACI story began in 2014, when leaders from NephCure Kidney International sought advice from leading medical professionals about ways to get better treatment options to patients faster. That following year, NKI launched NACI in partnership with the University of Michigan. Today, NACI is co-led by veteran representatives from NKI in suburban Philadelphia and an expert team from the University of Michigan, Ann Arbor.
NephCure Accelerating Cures Institute United States Trials Network
To read more about NACI, you can view the full press release here, or visit the NACI website at www.nephcureaci.org. If you have any questions or want to learn more, please send us an email at info@nephcure.org, and we will direct your message to the appropriate party.
NephCure invites all patient families, doctors, researchers, nurses, and everyone else impacted by Nephrotic Syndrome to join us on June 8th and 9th for a day on Capitol Hill. We will be meeting with Representatives, Senators, or Congressional staff to share our stories about Nephrotic Syndrome and kidney disease and to ask for research funding that can help us find better treatment options and cures.
This is your chance to make sure your voice is heard by legislators. Your story matters, and can help
shape policies that impact millions of Americans. NephCure only hosts this event every 2 years, so don’t miss your chance to share your story with your elected representatives.
If you are interested in attending Advocacy Day with us, please email Chelsey at cfix@nephcure.org or call 610-540-0186 ext 19 for registration and hotel information.
Date: June 8th & 9th
Location: Capitol Hill, Washington D.C.
Who: Everyone impacted by Nephrotic Syndrome
How to attend: Email cfix@nephcure.org for registration and travel information
Can’t make June 8th-9th? There are opportunities to advocate on Capitol Hill with other organizations! The dates and organizations are listed below, and feel free to email us if you would like more information on these events:
National Kidney Foundation: March 6- 7
Ask an Expert Webinar: FSGS and Pregnancy Webinar Recording
Pregnancy is an important topic for female patients who suffer from Nephrotic Syndrome. Click the link below hear from our expert Dr. Michelle Hladunewich about how FSGS effects pregnancy. We hope this webinar will help provide answers and hope!
NephCure Kidney International, in conjunction with leading institutions throughout the United States, presents a series of four regional Nephrotic Syndrome symposia.
These one day events will engage glomerular disease researchers, clinicians, other healthcare professionals and patient families to foster new collaborations, improve management of care and address current research issues.
• Course directors vary by location
• CME (Continuing Medical Education) accreditation is offered
• Corporate sponsorship opportunities are available
San Francisco, CA Friday, September 22
Charlotte, NC Friday, October 6
Houston, TX Friday, October 13
Are you or a family member/friend impacted by Nephrotic Syndrome, FSGS -Focal Segmental Glomerulosclerosis – or MCD – Minimal Change Disease?
You have come to the right place!
Hearing a foreign diagnosis that is difficult to pronounce, let alone understand, is very unsettling. Know that you are not alone. NephCure Kidney International and our community of patients, patient families, medical professionals, and researchers are here to provide you with the tools you need to get connected, get educated and find out about the latest research and treatment options available.
How do I get started?
Help us help you, by telling us what brought you here to NephCure Kidney International and what resources you are seeking.
It’s easy, just click here, answer a few simple questions on the NephCure Information Form. This gives us the jumping off point to find out where you are in your individual journey with Nephrotic Syndrome and how we can provide you with the tools you need to join in the fight for improved treatments and the cure!
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