Executive Director Letters

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).

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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…

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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…

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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…

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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.

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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…

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Advocacy Series: Highlighting Rare Across America

September 8, 2022

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…

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Advocacy: The Small Rock in a Big Ocean

August 25, 2022
Advocacy Warrior throwing a rock to create a big wave

Histiocytic disorders make up about six of the 7,000 rare diseases that exist today. When a condition is rare, it is unlikely that there will be federal funding to support…

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Advocacy Groups: A Powerful Network of Support

August 11, 2022
Location of Advocacy Groups

We speak to patients and families every day; brave, strong, resilient individuals who share their histio journey. The families and physicians we connect with are from all around the world…

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Industry Update from the World Orphan Drug Congress

July 25, 2022
Industry update from the World Orphan Drug Congress 2022

On July 11-13, I attended the World Orphan Drug Congress in Boston, Massachusetts. This congress has taken place for several years now and brings together people from all cross-sections of…

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