Know Rare

Know Rare Connecting Real People, Specialists and Clinical Studies in Rare Disease.

Happy Holidays from Know Rare! Our mission remains to bring vital resources to patients and their caregivers, especially...
12/25/2025

Happy Holidays from Know Rare! Our mission remains to bring vital resources to patients and their caregivers, especially during this season. We hope everyone finds a bit of rest and the ease so many deserve, while also recognizing how challenging this time can be for those facing medical difficulties. Sending our love and strength to the rare community this holiday season.

12/23/2025

“Any research happening for our condition is truly a blessing.”
Ariana Barton shares why clinical research in IgA Nephropathy matters so deeply, even if participation looks different for every patient. Progress depends on awareness, investment, and patients being seen and cared for.
At Know Rare, we help patients with IgAN find ongoing research and clinical trials so no one has to navigate it alone.

Learn more. Link in bio.

🌟 Spotlight on the IgA Nephropathy Foundation 🌟The IgA Nephropathy Foundation is a non-profit dedicated to the eradica...
12/22/2025

🌟 Spotlight on the IgA Nephropathy Foundation 🌟

The IgA Nephropathy Foundation is a non-profit dedicated to the eradication of IgAN, an autoimmune disease that attacks the kidneys.

It was founded in 2004 by a group of concerned family and friends with the goal of better funding research on IgAN. To date, the foundation has awarded almost $1,000,000 in grants to researchers working to understand and develop treatments for IgAN. The foundation also provides support, education, and other resources for patients and families affected by the disease.

To learn more about the work of the IgA Nephropathy Foundation, read about them on our blog: https://www.knowrare.com/blog-v2/igan

As the year winds down, we are revisiting some of our favorite Writing Rare moments. These writing tips from Laura Will ...
12/18/2025

As the year winds down, we are revisiting some of our favorite Writing Rare moments. These writing tips from Laura Will () and Erin Paterson () are a reminder that even in busy seasons, especially caregiving-heavy ones, your voice deserves space. December is a good time to come back to the page with fresh eyes.

12/09/2025

It wasn’t until attending a patient symposium hosted by the IgA Nephropathy Foundation that Ruchi felt inspired to train as an IgAN Ambassador and share her rare disease journey — hoping to provide knowledge and support to her Canadian IgAN community.

If you want to learn more about IgAN and the latest information on preserving kidney health, go to knowrare.com/igan.

12/08/2025

Learn more about why Ariana Barton chooses to be open and share her IgAN journey. You can watch the full video on YouTube: https://www.youtube.com/watch?v=7RfrX_G_kS0

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

“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 💛

A diagnosis of IgAN often comes after symptoms like foamy urine, blood tests, or a kidney biopsy.If you are living with ...
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

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


Happening Tonight!Take an hour for yourself. Join Know Rare and author Jessica Fein for Writing Rare, a free creative w...
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




⸻

“I was always very open in the hopes that it would help someone else, but also that it would help me, selfishly. Sharing...
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

3 days to go ✨. Take one hour for you.Join Know Rare & author Jessica Fein for Writing Rare, a creative writing workshop...
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

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