Executive Director Letters

How to Prioritize Self-Care When Your Diagnosis Gets Overwhelming

April 24, 2025

This week, we have a comforting post guest written by an old friend of mine, Doris Dahdouh about self-care through a diagnosis, and will be back soon to share about…

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Reaching out to your local community

April 17, 2025

This past Monday I attended my first Greater Pitman Chamber of Commerce Meeting. Deanna loved attending them when she was more local, and now that I am the most local…

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4 Stories of Advocating for Rare in DC

April 4, 2025

At the end of February, through the cold, and amidst all the change happening in Washington D.C., several members of our histio community ventured out to participate in Rare Disease…

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From the Desk of Communications Coming Soon

February 28, 2025

Hey histio community! This is the Strategic Commnications Associate, Peter Yanefski, here. I just wanted to briefly pop into the blog to talk as myself and announce that more of…

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Developing & Updating Clinical Guidelines for Histiocytosis

February 13, 2025

On January 16th, 2025, I attended an Annual Meeting for the National Comprehensive Cancer Network (NCCN)’s Histiocytic Neoplasms Panel. The physicians on the panel, from across leading cancer centers in…

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2025 and Beyond: Our Hope for the Next Chapter

January 30, 2025

As we at the Association bear through this cold January and get our footing in this new year, we’re looking back on 2024 and using our successes and opportunities for…

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Social Security Benefits for Children with Histiocytosis

December 12, 2024

In a blog post in October, we featured the abridged conversation between me and two Social Security experts Sandra Lamb and Jane Johnson, from the recent Beyond the Diagnosis podcast…

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Growing From the Pain: Lessons on Post-Traumatic Growth

November 14, 2024

Today I want to share about a topic that isn’t discussed nearly as much as it’s negative counterpart. I want to talk about Post-Traumatic Growth. Post-Traumatic Growth is a mental…

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Navigating SSI and SSDI Applications for Histio Disorders

October 10, 2024

Hi everyone! We hope you enjoyed all of the information we shared during Awareness Month!Recently, we shared that compassionate allowances for SSDI benefit enrollment were expanded for those with histiocytic…

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The INTO-HLH Registry and its Progress

August 8, 2024

This week, we are pleased to have team from the INTO-HLH Registry as guests, to speak about the registry, its purpose, and its progress. The INTO-HLH RegistryThe Insight into the…

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