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Welcome To The Histio Blog!

The histio community is a large support for so many patients and families. That's why our blog is dedicated to showcasing the stories and expertise of those in and around our community.

So far, we have heard from members of the Histiocytosis Association staff, Ambassadors, various families and even healthcare experts who work with the Association.

We hope you can come to rely on this space as a place of comfort and information as you face your own, or a loved one's histio journey.

Barbara Adams: Telling Her Story and Yours

October 30, 2025 Comments Off on Barbara Adams: Telling Her Story and Yours

When you train as a journalist, you don’t think the stories you’ll tell will be about yourself (well, except for the Newswriting 101 exercise where you have to pen your…

What Does It Really Mean to Be Well?

August 7, 2025 Comments Off on What Does It Really Mean to Be Well?

By Doris Dahdouh, MSW, LSW, INHC | Histiocytosis Peer Moderator August has been officially designated as National Wellness Month. Did anyone else know that? I’ll admit it—I didn’t! I only…

Designing Your Own Awareness Poster – From the Desk of Communications

July 24, 2025 Comments Off on Designing Your Own Awareness Poster – From the Desk of Communications

By Peter Yanefski – Strategic Communications Associate This year, the Association is encouraging people to design their own awareness posters for Histiocytosis Awareness Month in September. We have opened up…

Grounded in the Chaos: Navigating Summer with Histiocytosis

July 10, 2025 Comments Off on Grounded in the Chaos: Navigating Summer with Histiocytosis

By Doris Dahdouh, MSW, LSW, INHC | Histiocytosis Peer Moderator Structure. It’s not a word most people get excited about, but deep down, many of us know how much we…

The 33rd Annual Nikolas Symposium: A Pathway to a Cure 

June 18, 2025 Comments Off on The 33rd Annual Nikolas Symposium: A Pathway to a Cure 

At the age of 4 months, Nikolas Kontoyannis was diagnosed with histiocytosis-x (now known as Langerhans cell histiocytosis or LCH). Nikolas’ journey was very uncertain and faced many challenges, including…