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IgA February

Volume 03 | February 29, 2020

IgA Nephropathy Foundation News

KidneyX Update

On Thursday, February 6, the IgAN Foundation attended the KidneyX Congressional Briefing. KidneyX is a public-private partnership between the US Department of Health and Human Services and the American Society of Nephrology to accelerate innovation in the prevention, diagnosis, and treatment of kidney diseases. (courtesy of the KidneyX website). The IgAN Foundation is a huge supporter of KidneyX. At the briefing we heard from a winner of phase 1, the CEO of the National Kidney Foundation and others. KidneyX just closed the submission period for phase 2. We are anxiously awaiting the results. For more information, please visit their website

https://www.kidneyx.org/
.


Rare Disease Week –
February 23-29, 2020

The IgAN Foundation is showing its stripes for Rare Disease Week. Please check out our frame on Facebook & use it on your profile picture to show your stripes!

The Foundation attended the Rare Disease Caucus in Washington, D.C. on Tuesday, February 25. We learned about the bills currently in Congress benefiting rare disease. Some of the current asks of Congress are:

  • support increased funding for Orphan Products Clinical Trial Grants program
  • enact the Newborn Screening Saves Lives Reauthorization Act
  • support the creation of a Rare Disease Center of Excellence at the FDA. 

Eric Dube, CEO of Retrophin, was there to introduce Representative Gus Bilirakis, Co-Chair of the Rare Disease Caucus. It was great catching up with our friends at Retrophin, the International Cystinuria Foundation & NephCure.

National Kidney Month

March is National Kidney Month. This is a month that organizations come together to raise awareness for kidney disease. To help celebrate, on Monday, March 2 our Facebook frame will be live. Pop it on your profile picture and show your support.

Another way to show your support for National Kidney Month is to donate! Your donations go straight to research at both the University of Alabama Birmingham for their cutting edge IgAN research and Columbia University for their Giga Kids Study.

Giga Kids Update

Our friends at Giga Kids, the pediatric study of IgA Nephropathy, is looking for healthy controls. Please share this information with all your friends & family. Please check out the flyer & contact Carrie Enicke (carrie@igan.org) for more information.

Spark Registration is Live!

Please join us for IgANF Spark 2020 at the Nashville Airport Marriott on July 19-20. For information and to register, please go to
IgANF Spark 2020.

IgAN Foundation/NephCure Kidney International Merge Update

After a year of combining efforts with intentions of a future merge with NephCure Kidney International the IgAN Foundation made the decision to remain our own 501c3. We are grateful for the proposed opportunity and we will continue to partner on events with NKI, especially during this critical time of bringing better drugs to market for all orphan diseases. We are excited to focus now on our growth and build our grassroots foundation organically the way it has been for 16 years. We have many exciting opportunities ahead of us and we are committed to better brand ourselves as “A foundation built solely by patients & caregivers for patients & caregivers! ” We are unique!
Bonnie Schneider-Founder


We hope you are having a great start to 2020. We are looking forward to meeting so many of you at Spark 2020! Please reach out to us if there is anything you need.
Much love to all of our patients!
Bonnie Schneider & Carrie Enicke