Today is IgAN (IgA nephropathy) Awareness Day! If you have a rare kidney disease, such as IgAN, NephCure can offer you the community and support you need! 💚
NephCure is fighting to ensure that all individuals with rare, protein-spilling kidney disease have equitable access to the care and treatments that offer them the best kidney health outcome possible. To learn more, visit NephCure.org
#nephcure #rarekidneydisease #igan #iganephropathy
Happening NOW! The IgAN Alliance is hard at work in Dallas Texas removing barriers to IgAN (IgA nephropathy) care.
#nephcure #rarekidneydisease #iganephropathy #igan
For IgAN Awareness Day, Tony Pisa shares advice for those newly diagnosed with IgA Nephropathy. He highlights the importance of staying informed, being actively involved in your care, and working closely with your nephrologist.
Learn more and get support today at NephCure.org.
Today is IgA Nephropathy (IgAN) Awareness Day!💚
While this disease is rare, those living with it are not alone and deserve equitable access to care. Thank you for standing with the IgAN community! #iganawarenessday #igan #rarekidneydisease
Today is IgAN (IgA nephropathy) Awareness Day! For too long, this rare kidney disease has been underrepresented, with advancements driven largely by the courage and advocacy of patients and families themselves. Today, we invite you to add your voice to the cause. Together, we can ensure that all individuals with IgAN have equitable access to the care and treatments that offer them the best kidney health outcome possible.
Sign up to watch the panel that will be live streamed TODAY! Comment "IgAN" and we will send you DM to sign up or visit the events page on NephCure.org.
This day wouldn't be possible without the support of our sponsors: Alexion, Biogen, Travere, Vera, Charter Calliditas, Novartis, Otsuka & Vertex
Momentum is building at Workshop 2 of the IgAN Alliance!
After our first convening, we launched working groups focused on the biggest barriers to IgAN care including early diagnosis, urgency to treat, access, and evidence generation.
Now, 75 to 100 working group members and community leaders are back together to turn those priorities into action plans that drive real world change. This is our moment to pressure test solutions before the real work begins.
Say hello to Dr. Allan Pangburn.
Dr. Pangburn was diagnosed with focal segmental glomerulosclerosis (FSGS), a rare kidney disease, five years ago.
Thank you, Dr. Pangburn, for sharing your story and helping raise awareness for the rare kidney disease community. For more patient stories and resources, visit NephCure.org.
Did you know there are 150+ rare kidney diseases affecting hundreds of thousands of patients?
It’s time to step into the heart of advocacy.
Rare Kidneys on the Hill Day, on June 22nd-23rd in Washington, D.C., is your opportunity to step into the heart of advocacy to raise awareness about rare kidney disease (RKD) and make your voices heard by members of Congress.
Anyone impacted by rare kidney disease is invited to join us.
Comment "Hill Day" if you would like to learn more about Rare Kidneys on the Hill Day.
IgAN Awareness Day is fast approaching on May 14. Get ready to support patients like Elle—comment “IGAN,” and we’ll send you everything you need to prepare for the day!
Did you know? 💡
IgA nephropathy (IgAN) can only be diagnosed with a kidney biopsy. While blood and urine tests may show warning signs, a biopsy is essential to confirm the diagnosis and guide next steps.
💚 Help spread awareness – share this post to help others get the right answers sooner.
Want to learn more? Comment “IgAN Handbook” to get access to our easy‑to‑read guide.
Knowledge empowers patients, families, and caregivers. Start learning today.
Nothing quite prepares you for how quickly life can change.
We had just moved across the country, back to Tulsa, ready to start a new job and begin a new chapter. Within 24 hours, everything shifted. Instead of settling into our new routine, we found ourselves in the hospital (for 11 days) learning that our son had a rare kidney disease.
The emotions came all at once. Fear. Confusion. A thousand questions with no clear answers. And at the same time, an overwhelming sense of gratitude to be surrounded by people we love.
Looking back, it’s hard not to feel like God placed us exactly where we needed to be before we even knew what was coming.
Our previous doctor ended up stepping in and diagnosing Lakin on the spot. When we arrived at the hospital, one of our nurses was a former tennis student of mine and another friend rearranged everything just to be there for us and help care for our family.
The outpouring of support was incredible. It carried us when we didn’t yet know how to carry ourselves.
That was six years ago.
Since then, life hasn’t gone back to “normal." There’s no clear roadmap. Just constant uncertainty.
Lakin spent two years on high-dose steroids, four years on CellCept, and the last two years receiving Rituximab infusions. Each treatment has helped in its own way, but none of them come with certainty.
There are weeks without school. More hospital visits than we can count. And countless doctor visits with specialists who don’t always have answers because his disease is so rare.
So we advocate. Every single day. For every appointment. Every treatment decision. We research constantly and do everything we can to make the best possible decisions for our son.
But Lakin, he is stronger than all of it. Even on the days he feels the worst, he keeps going.
We continue to pray—for healing, clarity and research that leads to better treatments. For a future where kids like Lakin are understood individually, not just grouped together under a diagnosis.
Organizations like NephCure give us hope. And we hold onto that hope. Because this is our life. And Lakin is at the center of it—strong, resilient, and worth every fight.
Meet Michael Levine, NephCure’s Board President 💙
Michael’s connection to NephCure began in 2006, when his son Matthew was diagnosed with FSGS at just two years old. Determined to make a difference for his family — and for others facing rare kidney disease — Michael quickly became involved in our mission.
For more than a decade, he has served on NephCure’s Board of Directors and Executive Committee, helping lead signature events like Countdown to a Cure and All-in for a Cure, which have raised millions of dollars to advance research and support patients and families.
A proud husband and father, Syracuse University graduate, and President of L&L Painting for over 15 years, Michael’s leadership is rooted in one thing: showing up for this community.
Please join us in thanking Michael for his unwavering commitment to finding a cure 💚
