Posts Tagged ‘Advocacy’
Developing & 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 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 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 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 MoreGlobal Growth in Histiocytosis Patient Advocacy and Research
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…
Read MoreRare Disease Advisory Panel – PCORI Fall Meetings
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…
Read MoreA Peak Through the Clouds: NORD Breakthrough Summit
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…
Read MoreHistio Letter Writing Campaign: A Remarkable Success!
Welcome back to the blog! After a month off while we took more time to bring awareness to histio, we are back and ready to tell you all about what…
Read MoreWays to Advocate for Rare
Last year I talked to you about Rare Across America with two former participants, Drew Freedman and Leisa Greathouse. Now, we want to invite you to find something in rare…
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