Posts Tagged ‘Histiocytosis’
Reaching out to your local community
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…
Read MoreFrom the Desk of Communications Coming Soon
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…
Read MoreDeveloping & Updating Clinical Guidelines for Histiocytosis
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…
Read More2025 and Beyond: Our Hope for the Next Chapter
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…
Read MoreSocial Security Benefits for Children with Histiocytosis
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…
Read MoreGrowing From the Pain: Lessons on Post-Traumatic Growth
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…
Read MoreThe INTO-HLH Registry and its Progress
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…
Read MoreBest – so far – of 2024 from the Association
We’re about halfway through the year, and although we have a lot more to share with you this year, we wanted to take a quick pit-stop and do a quick…
Read MoreUAB Survivorship Study and its impact so far
The following blog post is adapted from the April University of Alabama at Birmingham (UAB) newsletter for the Histiocytosis Survivorship Study participants. We figured many of you, who haven’t been…
Read MoreMalignant Histiocytosis – Ultra rare disease among rare diseases
In March, we focused on Malignant Histiocytosis (MH), to learn more about this rarer form of histio. First, we sat down with Dr. Karen Rech and Dr. Aishu Ravindran to…
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