Know Rare

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

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.

In the article What Caregiving for a Rare Disease Really Looks Like, Dr. Paige Ryan, PT, DPT shares what caregivers actu...
02/17/2026

In the article What Caregiving for a Rare Disease Really Looks Like, Dr. Paige Ryan, PT, DPT shares what caregivers actually do, from clinical coordination and equipment management to constant decision-making, emotional labor, and burnout that no one else sees. Her experience as a pediatric physical therapist and caregiver coach sheds light on the invisible work of caregiving and why real support matters. She also offers suggestions and resources.

Follow Dr. Paige Ryan at for more insights and practical tips for caregivers. Read the full article by Dr. Paige Ryan on the Know Rare blog: https://www.knowrare.com/blog-v2/what-caregiving-for-a-rare-disease-really-looks-like

Thank you to the Danon Foundation for your work for those living with or affected by Danon Disease . Read more about the...
02/15/2026

Thank you to the Danon Foundation for your work for those living with or affected by Danon Disease . Read more about their work advocating for and empowering the Danon Community on the Know Rare Blog: https://www.knowrare.com/blog-v2/danon-foundation

Fatigue is a common interruption of your life when your platelets drop due to ITP. How can you describe how it affects y...
02/10/2026

Fatigue is a common interruption of your life when your platelets drop due to ITP. How can you describe how it affects your life? Take the Fatigue Survey and see how much it does, and share it with your family and your doctors to help them understand.

Link to survey: https://www.knowrare.com/fatigue-itp

02/03/2026

Thinking about a clinical trial for IgA nephropathy (IgAN)?

In this video, Katie Lenhoff () shares why some people living with IgAN choose to join clinical trials alongside their regular kidney care. Clinical trials for IgAN are led by specialists who focus on this condition and may offer closer monitoring between nephrology visits.

If you’re interested in learning more about IgAN clinical trial options, Know Rare can help you explore what might be available and keep you informed about ongoing research. Go to https://www.knowrare.com/igan-au?utm_source=Facebook&utm_medium=organic_social&utm_campaign=KatieLehnhoff_Nutrition_AU_Feb26&utm_term=en

01/26/2026

"I didn't want to get out of bed." .carrielee shares how she learned to maneuver her life around her diagnosis of ITP.
Know Rare can help you find and access research and resources for ITP at https://knowrare.com/itp or at the link in bio.

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

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