Histio Blog
We do not always understand why we face immense challenges in life. These challenges take many shapes and sizes from not receiving that acceptance letter, to losing a loved one,…
In this post, a guest blogger and mother to Nolan, shares her family’s story of their journey with Hemophagocytic lymphohistiocytosis (HLH). We cannot thank the family enough for the courage…
An in depth look at Clinical Trials with Be The Match Medical advancements take time and research. There are several types of studies and trials that are conducted during the…
When diagnosed with a rare disease, there are so many questions that need to be answered. One important aspect of the work of the Histiocytosis Association is to help provide resources and information when you…
For many years, histiocytosis was thought to only or primarily affect children. Over the years, more adults have been diagnosed with histiocytic disorders which has changed how the Histiocytosis Association…
June marked the close of our Scholarship Program application window, and the start of the application window for the Histiocytosis Association Research Program. In my time on the Board of…
I hit the road in early May, the wind in my hair as I drove my Mini Cooper down the highway, westbound and headed out for our first in-person events…
Our fundraising events are incredibly special. While they do seek to bring together the community to raise funds for research and other important programs the Association runs, the emphasis at…
One of the ways we can propel progress is through advocacy. It seems impossible, to be able to sit with legislatures and policy makers, and to drive forward new processes and…
The National Organization for Rare Disorders (NORD) is an incredible group of individuals, dedicated to support the needs of patients, families, and organizations impacted by rare diseases and conditions. Last year, we…