NephCure Kidney International ®

Saving Kidneys, Saving Lives

NephCure Accelerating Cures Institute: Worldwide Launch and US Expansion

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The NACI Network is expanding worldwide to speed more effective treatments to individuals with Nephrotic Syndrome

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.

Watch the Demystifying Research Webinar!

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Watch NKI and special guest speaker Dr. Jonathan Hogan from The University of Pennsylvania, as we demystify Nephrotic Syndrome research! Research is important to all members of the NS community- so why not learn about it!

We talk about how research works, what is happening in the NS research world, and what patients and their families can do to help. Come with your research questions, and prepare to have them answered!

CLICK HERE TO WATCH THE WEBINAR 

Newest NKI-ASN Grant Recipient

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NEWEST NKI-ASN GRANT RECIPIENT: DR. AZELOGLU

We would like to officially congratulate Dr. Evren Azeloglu, the newest recipient of the NKI-ASN Grant. Dr. Azeloglu is an Assistant Professor in the Department of Pharmacology and Systems Therapeutics at the Icahn School of Medicine at Mount Sinai. He was originally trained as a mechanical engineer, but later Untitledwent on to receive his Ph.D. in Biomedical Engineering from Columbia University. In 2010, Dr. Azeloglu was awarded the Howard Hughes Medical Institute Fellowship from the Life Sciences Research Institute. His background in biomechanics and systems biology is uniquely positioned to study complex diseases such as hypertension and diabetic nephropathy. He aspires to design transformative therapeutic tools using nanotechnology and tissue engineering.

The title of Dr. Azeloglu’s project is “mechanosensitive control of podocyte cytoskeleton and remodeling.” Hypertension is one of the major drivers of kidney disease. However, the physical mechanisms through which high blood pressure affects nephrotic syndrome are not well known. Dr. Azeloglu plans to utilize engineering methods to investigate the structural properties of the cells of the kidney glomeruli during healthy and diseased conditions. This project will be conducted in hypertensive animal models wit­h a nanotechnology platform. He will explore how kidney cells retain their structural integrity against mechanical injury (i.e. due to high blood pressure) and identify potential genes that may be responsible for maintenance of the healthy cellular structure under hypertension. This project aims to use state-of-the-art bioinformatics and nanotechnology tools to link the structural integrity of glomerular cells to overall kidney function. The results of his research may directly translate into treatable drug targets that can improve the resilience of kidney cells against high blood pressure, and slow down the progression of chronic kidney disease.

Check out our Peer to Peer Programs!

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imagesOne of the most important things we do at NephCure is connect people to others experiencing similar challenges of living with chronic kidney disease. Whether it be understanding the complexity of Nephrotic Syndrome/FSGS, the side effects of medications, frequent trips to the nephrologist or navigating your way through labs and diets, it can be incredibly overwhelming. At NephCure, we understand the value of connecting patients and caregivers with others to share experiences, frustrations and, better yet, good news!

That’s why we’re expanding our Peer to Peer Support Program. In addition to our online support community, NephSpace, we offer our Patient to Patient Connections (P2PC) program. P2PC is a worldwide organized network of patients and caretakers whose lives have been affected by the diseases causing Nephrotic Syndrome and FSGS.  It is designed to connect individuals via email or phone based upon any or all of the following: diagnosis, symptoms, and complications, age of individuals or sometimes specific geographical area.  Our volunteer patient/caretaker ambassadors are committed to offering support and sharing their experiences with others who are facing similar challenges.  You can learn more or be connected with a patient/caretaker ambassador here https://nephcure.org/?p=1390.

We encourage you to take time to make connections with others in similar situations as we know you will benefit greatly from the support and sharing! 

 If you are interested in becoming Volunteer Patient/Caretaker Ambassador please visit https://nephcure.org/get-involved/become-a-volunteer/ or contact Kelly Helm at khelm@nephcure.org.

Are You Newly Diagnosed or New to NephCure?

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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. 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!

 

 

Our Mission

NephCure Kidney International’s ® mission is to accelerate research for effective treatments for rare forms of Nephrotic Syndrome, and to provide education and support that will improve the lives of those affected by these protein-spilling kidney diseases.

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Contact Information

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1.866 NephCure (637-4287)
info@nephcure.org
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