Executive Director Letters

Pediatric to Adult: Our Focus on Transitions

March 21, 2024

15 years ago, investigators around the world were still searching for effective therapies for histiocytic disorders. We were beginning to learn about the genetic mutations that are present with histio.…

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Rareness Creating Awareness – Rare Disease Day 2024 Recap

March 7, 2024

This Rare Disease Day was the rarest of all. It was on one that fell on a Leap Day. Given this occasion, we went all out for Rare Disease Day…

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Setting A Course for the Future – The Histiocytic Disorders Workshop

February 22, 2024

On February 1st and 2nd of this year, approximately 70 healthcare providers and patient advocates came together at St. Jude Children’s Hospital to brainstorm solutions to gaps and challenges for…

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2023 Histiocytosis Association Research Grant Recipients

February 8, 2024
2023 Histiocytosis Association Research Grant Recipients Featured Photo. From left to right. Polina Shindiapina, Randy Cron, Ruthy Shiloh & Sarah Elitzur, and Nicole Coufal

Since 1992, because of your generosity and dedication, the Histiocytosis Association has granted over $7.5 million for research projects in 14 countries – that’s 211 projects, 7 clinical trials and…

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The Start of an Exciting Year – A Peek Forward

January 25, 2024

Last blog post, we reflected on 2023 – a year with many accomplishments in the histiocytosis research and community outreach areas. We are so grateful for YOU and all you…

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Wrapping up a Wonderful Year – A Look Back

January 11, 2024

Here are some of the key reflections of 2023 and our goals for 2024. I hope this brings color to the IMPACT that YOU have achieved – we work together as a community

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From Greece, with Research: 39th Annual Histiocyte Society Meeting

December 7, 2023

Every year, the Histiocyte Society, a partner organization of ours, meets in a new location to share research and celebrate the achievements many researchers have made throughout the year in…

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Global Growth in Histiocytosis Patient Advocacy and Research

November 16, 2023

Me and a few members of our staff returned from the 39th Annual Histiocyte Society Meeting in Athens, Greece a few weeks ago and now that we’ve unpacked our suitcases…

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Rare Disease Advisory Panel – PCORI Fall Meetings

November 2, 2023
Deanna pictured at PCORI Rare Disease Advisory Panel Meeting

The Patient Centered Outcomes Research Institute (PCORI) is an independent, nonprofit research organization that seeks to empower patients and others with actionable information about their health and healthcare choices. They…

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A Peak Through the Clouds: NORD Breakthrough Summit

October 19, 2023

I was so excited to attend the NORD Breakthrough Summit, where patient advocacy professionals, pharmaceutical companies, biotech, FDA, and other key stakeholders in rare disease come together to learn and…

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