Posts Tagged ‘Rare Disease’
The 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…
Read More32nd Annual Nikolas Symposium (Greek Histiocytosis Meeting)
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 MoreEpisode 065- AVP-Deficiency Explained Understanding and Managing a Rare Condition
In this episode Kathy talks with Pat Gildroy, lead administrator of the Facebook Group, “Got Arginine VasoPressin Deficiency?” about the resources, symptoms, tests, and the patient experience for those living…
Read MorePatient Centered – Rare Disease Led
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 MoreRareness Creating Awareness – Rare Disease Day 2024 Recap
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…
Read MoreSetting A Course for the Future – The Histiocytic Disorders Workshop
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…
Read More2023 Histiocytosis Association Research Grant Recipients
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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