Know Rare

11/24/2025

“When I was diagnosed, I didn’t really understand the gravity of it… I felt fine, so I didn’t process it.”
Ruchi’s story is something we hear often in IgAN. A diagnosis can land in the middle of everything else in life, with little information and even less support.
If you’re living with IgAN, Know Rare can help you understand your options and connect you to research that may offer more clarity and ongoing monitoring.
Learn more at knowrare.com/igan 💛

11/24/2025

A diagnosis of IgAN often comes after symptoms like foamy urine, blood tests, or a kidney biopsy.
If you are living with IgAN, clinical studies can provide ongoing testing and monitoring that may support your kidney health.
Learn how to get involved: https://www.knowrare.com/igan

11/17/2025

Last week’s Writing Rare workshop keeps echoing in our hearts, and this reflection from Sylvia is one of the reasons why. 💛

To everyone who joined us: thank you for showing up, sharing vulnerably, and trusting the space with your stories. What you wrote, felt, and released matters.

Deep gratitude to Jessica Fein for guiding us with such intention and care, and to Laura Will for holding the space so thoughtfully.

Community, creativity, and healing; this is why we write.

11/12/2025

Happening Tonight!
Take an hour for yourself. Join Know Rare and author Jessica Fein for Writing Rare, a free creative writing workshop for rare patients and caregivers to pause, reflect, and reclaim your story.

No writing experience needed! Just bring yourself and a notebook.

🗓 Tonight, Wednesday, Nov 12
🕖 7:00 PM ET | 6:00 PM CT
💻 Free on Zoom
👉 RSVP now: https://www.eventbrite.com/e/1901022662959?aff=oddtdtcreator




⸻

11/12/2025

“I was always very open in the hopes that it would help someone else, but also that it would help me, selfishly. Sharing my experience has been therapeutic and healing… it’s nothing to be ashamed of.” - Ariana

Ariana shares how openness helped her navigate IgA Nephropathy, a rare kidney disease that often goes unseen.

🎥 Watch her full story here: https://www.youtube.com/watch?v=7RfrX_G_kS0

11/09/2025

3 days to go ✨. Take one hour for you.
Join Know Rare & author Jessica Fein for Writing Rare, a creative writing workshop for rare patients and caregivers to reconnect with their stories.

🗓 Wednesday, Nov 12 | 7 PM ET
💻 Free on Zoom
🔗 RSVP: https://www.eventbrite.com/e/1901022662959?aff=oddtdtcreator

11/09/2025

Ariana shares how openness helped her navigate IgA Nephropathy, a rare kidney disease that often goes unseen.
🎥 Watch her full story here: https://www.youtube.com/watch?v=7RfrX_G_kS0

11/05/2025

Every rare disease story helps someone feel less alone.
In this new interview, Ariana Barton () opens up about living with IgA Nephropathy (IgAN), a rare kidney disease, and finding strength through community and advocacy.
Watch her full story here: https://www.youtube.com/watch?v=7RfrX_G_kS0

10/31/2025

For one mom, Halloween is more than costumes and candy — it’s a moment to celebrate moving at her family’s own pace.

“Crip time” is a term used in the disability community to describe living outside society’s usual sense of speed and productivity. In this story, (Laura Will) finds joy in the slower, handmade magic of creating her son’s costume — and reminds us that time spent with love is never wasted.

🎃 Read the full reflection: https://www.knowrare.com/blog-v2/halloween-joyful-crip-time

10/29/2025

Take charge of your IgA Nephropathy (IgAN) journey.
If you’re ready to explore new treatment options and connect with top kidney specialists, visit knowrare.com/igan to learn how to get involved.

10/29/2025

When Ruchi was first diagnosed with IgA Nephropathy, a rare kidney disorder, she didn’t receive much information, so she started seeking it herself.

Now, she’s using her voice to help others do the same. 💜
Watch her story on the Know Rare YouTube channel.
Need help with your IgAN? Send us a DM or go to knowrare.com/igan today.

10/28/2025

Thank you to everyone who joined last night’s screening of UNSEEN 💛

Missed it? You can still watch the film on-demand until 11:59 p.m. CT on 10/29 — no charge to view.
🎥 Watch here: https://caregiverdoc.com/license/knowrare/

Special thanks to producer Amanda Dyer and to Laura Will for the meaningful discussion that followed.

UNSEEN How We’re Failing Parent Caregivers & Why It Matters Many parent caregivers are struggling. We’re failing them, and it’s costing us all.   WATCH THE TRAILER