Know Rare

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

06/05/2026

Whitney first thought her symptoms might be Lyme disease. She had joint pain, fatigue, and spent a lot of time outdoors, so it made sense. But after about a year, a primary care doctor looked at her swollen hands and suspected something else: scleroderma. Watch her share about her journey in part one of this five part series.

To participate in scleroderma research, visit knowrare.com/scleroderma.

(Whitney is sharing her personal experience. Please speak with your doctor about your own symptoms and care.)

New series: Real stories of living with scleroderma.Scleroderma is rare, and it's often misunderstood, even by the peopl...
06/04/2026

New series: Real stories of living with scleroderma.

Scleroderma is rare, and it's often misunderstood, even by the people living with it at first. Over the next 5 posts, Whitney Gearin shares what the diagnosis really looks like day to day: the early signs that got missed, the way it reaches far beyond the skin, and what helps when you're learning to live with it.

These are her words, in her time. If you or someone you love is navigating scleroderma, we hope this series helps you feel a little less alone.

Follow along for all 5 parts. Part 1 drops soon.

If you're interested in participating in research for scleroderma, visit knowrare.com/scleroderma

Thank you to everyone who joined us for last week's screening and Q&A of Dragon Mom.SWIPE TO SEE WHAT PEOPLE HAD TO SAY ...
06/03/2026

Thank you to everyone who joined us for last week's screening and Q&A of Dragon Mom.

SWIPE TO SEE WHAT PEOPLE HAD TO SAY -->

We are so grateful to Laura ( ) and Dave for sharing their family’s story with such honesty, love, and purpose, and for opening up a meaningful conversation about disability, inclusion, accessible play, and what it means to design a world where every child belongs.

A special thank you to for creating this beautiful and powerful film and attending the Q&A, and to Dr. Brian Wishart for joining us and helping bring insight to the conversation around the benefits of outdoor activities for those living with disabilities.

The response reminded us why stories like this matter. They help people feel seen, create understanding, and move us toward a more accessible and compassionate world.

Follow for more stories, screenings, and conversations centering rare disease, caregiving, disability, and inclusion.

Every child deserves a place to play.Join Know Rare for a free private screening of Dragon Mom, a moving short documenta...
05/26/2026

Every child deserves a place to play.

Join Know Rare for a free private screening of Dragon Mom, a moving short documentary following Laura Will and her family as they search for activities their son Alden can enjoy while navigating life with a wheelchair and disability.

The film also explores Laura’s advocacy for accessible playgrounds and inclusive spaces where children with disabilities can play, participate, and belong.

The screening will be followed by a live Q&A with Laura Will.

📅 Tomorrow, May 27
⏰ 8:30 PM ET
💻 Virtual event
🎟️ Space is limited

Register here: https://www.eventbrite.com/e/1989841429280?aff=oddtdtcreator

05/21/2026

Join us for a free screening of Dragon Mom, followed by a live Q&A with Laura Will, one of the film’s featured subjects.

Dragon Mom follows Laura and her family as they search for ways for her son Alden to experience joy, adventure, and play as a wheelchair user. The film also explores the broader fight for accessible playgrounds, inclusive spaces, and a world where every child belongs.

This is a powerful film for caregivers, families, disability advocates, educators, healthcare professionals, and anyone who cares about accessibility and inclusion.

Reserve your spot here: https://www.eventbrite.com/e/private-screening-dragon-mom-documentary-live-qa-tickets-1989841429280

For too long, females with X-linked conditions like Danon disease have been told they are “just carriers.”But many exper...
04/07/2026

For too long, females with X-linked conditions like Danon disease have been told they are “just carriers.”

But many experience real symptoms and real challenges.

They are often overlooked in research, misunderstood in clinical settings, and left without clear guidance or support.

That’s why organizations like Remember The Girls are so important, especially for communities like Danon disease that fall under X-linked conditions. They’re working to make sure girls and women are seen, heard, and supported.

If you or a loved one is affected by Danon disease, you’re not alone. 💛

Know Rare can help you learn more about the latest research and support options.

February 28 is Rare Disease Day 💙Today we honor the millions of individuals and families living with rare diseases by sh...
02/28/2026

February 28 is Rare Disease Day 💙

Today we honor the millions of individuals and families living with rare diseases by sharing their stories, strength, and resilience.

Download our free e-book, We Are Rare, featuring powerful stories from the Know Rare community and voices that deserve to be heard:
👉 https://www.knowrare.com/book-download

Because awareness leads to research.
Research leads to progress.
And every rare story matters.

Rare Disease Awareness Month may be coming to and end.But rare diseases are not.Families are still waiting for answers.P...
02/28/2026

Rare Disease Awareness Month may be coming to and end.
But rare diseases are not.

Families are still waiting for answers.
Patients are still navigating uncertainty.
Research is still needed.

And we are still here.

All year long, Know Rare connects patients to research, resources, and real support.

Because rare is 365.

If you’re living with IgA Nephropathy, you’ve probably wondered:“Is there a specific kidney diet I should be following?”...
02/23/2026

If you’re living with IgA Nephropathy, you’ve probably wondered:
“Is there a specific kidney diet I should be following?”

The answer is not as simple as a list of foods to avoid.

There is no one size fits all IgAN diet. But research shows that nutrition can support kidney health when you focus on:

• Lowering sodium
• Moderating protein
• Choosing more fiber and plant rich foods
• Personalizing your diet based on lab results

Diet does not replace treatment.
It supports blood pressure control, reduces proteinuria, and may help slow progression.

And progress is happening. There are ongoing clinical trials in IgAN focused on improving long term outcomes.

If you want help finding IgAN research or clinical trials, Know Rare can help guide you.
Visit the link in the comments to learn more.

Written by renal dietitian Katie Lenhoff, APD.

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