Executive Director Letters
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 More
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 More
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…
Read More
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 More
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 More
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 More
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…
Read More
In mid-May, I had the opportunity to once again attend the 32nd Annual Nikolas Symposium hosted by the Kontoyannis family and the Artemis Foundation (Histio Hellas) in Greece. The Nikolas…
Read More
The Patient Centered Outcomes Research Institute (PCORI)’s federally mandated Rare Disease Advisory Panel (RDAP) has been an incredible opportunity. For the last three (3) years I have served on the…
Read More15 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.…
Read More