Know Rare

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

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

Every rare disease story helps someone feel less alone.In this new interview, Ariana Barton () opens up about living wit...
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

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

Address

New York, NY

Telephone

+19179796842

Website

Alerts

Be the first to know and let us send you an email when Know Rare posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Contact The Practice

Send a message to Know Rare:

Shortcuts

Featured

Share

Share on Facebook Share on Twitter Share on LinkedIn
Share on Pinterest Share on Reddit Share via Email
Share on WhatsApp Share on Instagram Share on Telegram

Category