Posts Tagged ‘Rare Disease’
Episode 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…
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 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 MoreA Guide to Genetic Testing
Recently, we had a webinar on the genetics of HLH, part of which touched on genetic testing to receive a diagnosis or pinpoint a mutation. In histiocytic disorders, genetic testing…
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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