Know Rare

08/06/2025

At first, the term glass child didn’t sit right with her.

Was it calling her fragile? Breakable?

But once Gina DeMillo Wagner understood what it really meant: a child whose needs are often invisible and "see through". She realized how deeply it resonated.

If you’ve ever felt unseen in your own family, this one’s for you. The full recording of our chat with Gina is available on YouTube. Link to the full video: https://www.youtube.com/watch?v=uuOKtqstZCM&t=61s

08/06/2025

You don’t have to be a superhero to support your child.

At our recent event, author Gina DeMillo Wagner reminded us: kids don’t need perfection, they need presence. Especially when parenting the sibling of a child with complex medical needs.

💬 Watch the full conversation on YouTube: https://www.youtube.com/watch?v=uuOKtqstZCM&t=61s

07/31/2025

‘Why them and not me?’

In this moment from last week's author talk with Gina DeMillo Wagner, she names the guilt many ‘healthy siblings’ carry, the kind of survivor’s guilt that doesn’t get talked about enough.

This conversation struck a chord with so many of you. Watch this clip and let us know if it resonates.

Don't miss our future events which are thoughtfully curated with various folks and perspectives in the rare disease community. Sign up for our email newsletter at Kowrare.com/newsletter or link in bio!

07/29/2025

📣 Big news from the KnowRare team!

After hearing from so many of you about the need for better tools to track your health, understand your symptoms, and tell your story—we created something new.

Introducing HealthStory: a private, AI-powered journaling app to help you connect the dots between your symptoms, lifestyle, and well-being.

Whether you’re living with a rare condition or just trying to understand your health better, HealthStory AI is here to help.

👉 Follow us! Go to instagram.com/healthstory_ai to learn more and join the early community.

After hearing from so many of you about the need for better tools to understand your health, find trends with your symptoms, and tell your story, we created something new.

Sign up for HealthStory now at healthstoryai.com?utm_source=facebook&utm_medium=organicsocial&utm_campaign=in&utm_term=

07/29/2025

If there's someone in your family with kidney disease, find out the latest about what that means for your IgA Nephropathy on the Know Rare blog here: https://www.knowrare.com/blog-v2/igan-family-history

07/25/2025

Spotlight!

Meet Sierra Domb, a neuroscience research collaborator and health communicator living with erythromelalgia (EM)—a rare, debilitating neurovascular pain disorder that causes episodes of burning pain, redness, and heat, typically in the hands and feet, triggered by warmth or exertion.

When Sierra first began experiencing symptoms, she was often met with bewilderment, shock, and a lack of compassion. It wasn’t until young adulthood that she received a formal diagnosis of EM.

Thanks to her scientific background, Sierra gained a deeper understanding of how the brain and nervous system influence EM. She now manages her symptoms through mindfulness practices and by staying cool whenever possible, using ice packs, portable fans, and umbrellas for shade.

Today, Sierra shares her story to raise awareness and remind others facing similar struggles that it’s possible to find moments of happiness and lead a fulfilling life.

Read more about her story on the Know Rare blog: https://www.knowrare.com/blog-v2/sierra-domb

If you or someone you know is affected by EM, visit the Erythromelalgia Association for helpful resources: https://burningfeet.org

07/22/2025

⏳ Last chance to sign up!

What happens to the sibling who’s expected to be okay, because they’re not the one with the diagnosis?

Join us tomorrow at 11 AM PT/ 2 PM ET for a powerful conversation with memoirist Gina DeMillo Wagner, who grew up as the “healthy sibling” in a rare disease family.

Her story is for anyone who’s ever felt invisible while holding everything together.

🖥️ Free + virtual

🔗 RSVP now: https://www.eventbrite.com/e/in-the-shadow-of-rare-growing-up-as-the-healthy-sibling-tickets-1478821688479?aff=oddtdtcreator

07/18/2025

Being the strong one doesn’t mean you didn’t hurt.

Our Author talk with Gina DeMillo Wagner is for the overlooked siblings, the silent caregivers, the ones who feel like their stories never got told.

Join us on July 23 for a rare and free conversation with the memoirist who wrote the book she needed to read.

🔗 RSVP: https://www.eventbrite.com/e/in-the-shadow-of-rare-growing-up-as-the-healthy-sibling-tickets-1478821688479?aff=oddtdtcreator

07/17/2025

Feedback like this reminds us why we do what we do. Thank you for making our first 'Authors in Rare Disease' event a success! 💛

Don't miss our next book talk with award-winning journalist and author Gina DeMillo Wagner on her latest memoir, Forces of Nature. Link to rsvp: https://www.eventbrite.com/e/in-the-shadow-of-rare-growing-up-as-the-healthy-sibling-tickets-1478821688479?aff=oddtdtcreator

07/16/2025

In families shaped by rare or complex medical conditions, the “healthy sibling” often disappears into the background, carrying quiet grief, unspoken responsibility, and a longing to be seen.

Join us for a virtual conversation with memoirist Gina DeMillo Wagner, whose book Forces of Nature explores what it meant to grow up in the shadow of her brother’s profound medical needs.

💬 We’ll talk about:
— invisible caregiving
— family dysfunction and love
— what siblings carry into adulthood
— how nature and storytelling can lead to healing

📅 Tuesday, July 23 at 2:00 PM ET
🖥️ Free + virtual
🔗 RSVP: https://www.eventbrite.com/e/in-the-shadow-of-rare-growing-up-as-the-healthy-sibling-tickets-1478821688479?aff=oddtdtcreator

This event is for siblings, caregivers, parents, and anyone curious about what families really go through behind closed doors.

07/16/2025

What does it mean to grow up in the shadows of someone else's needs? Tune in on Wednesday, July 23rd, at 2 pm EST for a conversation with award-winning journalist and author Gina DeMillo Wagner on her latest memoir, Forces of Nature, where she opens up about the emotional weight of being the 'healthy' sibling, exploring the themes of caregiving, home, loss, and resilience. Sign up for free here: https://www.eventbrite.com/e/in-the-shadow-of-rare-growing-up-as-the-healthy-sibling-tickets-1478821688479?aff=oddtdtcreator

🎉 All attendees will be entered for a chance to win a copy of Gina D. Wagner's memoir 🎉

More About the Author:

Gina DeMillo Wagner is an award-winning author who writes about sibling loss, disability, and rare disease, estrangement, and the intersections of nature and nurturing. Her work has been featured in The New York Times, Washington Post, Memoir Magazine, Modern Loss, Self, Outside, Psychology Today, Hippocampus, and the Know Rare blog. Her memoir, Forces of Nature, won a 2024 Best Indie Book Award as well as two Zibby Awards.

Gina DeMillo Wagner talks about her book on grief, family chaos, and the invisible weight carried by siblings of those with complex illness.

07/14/2025

💬 “It was certainly an act of catharsis to write it, but it was an added act of catharsis to put it out and share it with the world.”

After her son received a rare disease diagnosis, Laura Will () began writing as a way to cope with the overwhelming emotions, uncertainties, and unanswered questions so many rare parents face. Sharing her story became more than personal—it became a way to connect with others walking a similar path.

🧬 Rare disease can be isolating. But storytelling reminds us: we are not alone.

To watch the full discussion between Laura Will and Erin Paterson and the book, Positively Rare, go to: https://www.youtube.com/watch?v=4JS9NoUeAVQ

📝 Read Laura’s story on the Know Rare blog.