Know Rare

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

No parent is ever fully prepared for an emergency hospitalization.For parents of children with a rare disease, preparati...
01/20/2026

No parent is ever fully prepared for an emergency hospitalization.
For parents of children with a rare disease, preparation isn’t optional—it’s essential.

The cycle of ER visits and recovery can feel endless. But progress is being made as researchers continue to study rare diseases like Danon.

Learn about the latest Danon disease research and hear from parents like Lynn on the Know Rare blog: https://knowrare.com/danon

Get access to the latest research and experts for IgA Nephropathy at knowrare.com/igan.
01/20/2026

Get access to the latest research and experts for IgA Nephropathy at knowrare.com/igan.

Learning that your child has a rare genetic disorder is a profound moment for any parent. As Becky Tilly, the author of ...
01/20/2026

Learning that your child has a rare genetic disorder is a profound moment for any parent. As Becky Tilly, the author of Thrive Rare, discovered, facing the challenges of anxiety and caring for two children with a rare genetic syndrome that impacts their development can be overwhelming. As she describes in her book, she has learned to train her mind to focus on the postiive, and celebrate every small accomplishment. Find out how to access the latest research in Danon disease from Know Rare, and get more of Becky's advice in her book "Thrive Rare".

For more info on Danon Disease go to link in bio or knowrare.com/danon

Know Rare can guide you. Go to https://Knowrare.com/IgAN and learn more about the opportunities to join clinical researc...
01/13/2026

Know Rare can guide you. Go to https://Knowrare.com/IgAN and learn more about the opportunities to join clinical research for IgAN.

01/12/2026

It’s not easy to find a clinical study or know how to connect to it, but Know Rare can guide you. Go to https://Knowrare.com/IgAN and learn more about the opportunities to join clinical research.

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 💛

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