Executive Director Letters

A Flyers Histio Night Two Years in the Making

January 19, 2023

Slightly over a year ago, our former Communications Director started our first Histio Night at the Flyers in early 2022. Last week, we had the second annual Histio Night at…

Read More

Behind the Scenes of the Histiocytosis Association in 2023

January 5, 2023

I cannot believe we are already in 2023! Why does it feel like the years fly by the more we experience? In November, we held our HopeCast, where I shared…

Read More

Action in the Face of Grief from Rare Disease (HLH)

December 15, 2022
Action-in-the-Face-of-Grief-from-Rare-Disease- HLH

Maire soothed her to sleep like she always had; she sang The Rainbow Song to her. They sang it together as Lils drifted off to sleep. That was the last time Maire heard her daughter’s voice.

Read More

Breakthrough for Histiocytosis: Cobimetinib Approval by the FDA

December 1, 2022

You may have heard the exciting news, that on November 1st, 2022, Memorial Sloan Kettering Cancer Center (MSK) announced that the U.S. Food and Drug Administration (FDA) approved the oral MEK inhibitor drug cobimetinib (Cotellic®) for the treatment of adult patients diagnosed with histiocytic neoplasms (HN).

Read More

8 Years of International Collaboration from Seed Funding

November 17, 2022

Collaboration noun. – The action of working with someone to produce or create something. A common part of our daily lives, and a critical part of advancing research for histiocytosis…

Read More

Sisterhood and Survival: The Hope of Bone Marrow Registries

November 3, 2022

It’s always a great feeling when we get to bring good news to this blog. There are many challenges that those with histiocytic disorders may face, but there are also…

Read More

Highlights from this year’s meeting of the Histiocyte Society

October 20, 2022
Highlights from this years meeting of the Histiocyte Society

This is part 2 of our series recapping the events of the 38th Annual Histiocyte Society meeting. Click here for part 1. Every 3 years there is a passing of…

Read More

The 38th Annual Histiocyte Society Meeting: Building Bridges for a Cure

October 6, 2022
38th Histiocyte Society Meeting Blog Part 1

On September 17th, the Board of the Histiocyte Society gathered in Karolinska Institute in Stockholm, Sweden to kick off the 38th Annual Meeting of the Histiocyte Society, which continued on for the next three days. Being in my mid-thirties, it is inspiring and humbling that for my entire life, there has been an international effort toward advancing knowledge about histiocytic disorders and improving outcomes for patients through the planning, development, sponsorship and oversight of clinical research.

Read More

Resilience in Rare: The Other Half of the Battle

September 22, 2022
Resilience in Rare: The Other Half of the Battle

In this post we will be focusing on a subject that is deeply important to those with Histiocytosis and other rare disorders. Resilience.  To speak on this topic, our Strategic…

Read More

Advocacy Series: Highlighting Rare Across America

September 8, 2022
Advocacy-Series-Highlighting-Rare-Across-America-Blog-Image

As I mentioned in part one of our two part series on Advocacy, the role of advocacy in rare disease helps to ensure that policymakers and legislators know about challenges…

Read More