Posts Tagged ‘Congress’
Rareness 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 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 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…
Read MoreWild Zebras Running Free: Rare Disease Day 2023
“Look for horses, not zebras.” That’s what doctors often teach in medical school to those learning how to diagnose illnesses. Looking for the rare disease comes later. First, they are…
Read MoreAdvocacy Series: Highlighting Rare Across America
As I mentioned in part one of our two part series on Advocacy, the role of advocacy in rare disease helps to ensure that policymakers and legislators know about challenges…
Read MoreAdvocacy: The Small Rock in a Big Ocean
Histiocytic disorders make up about six of the 7,000 rare diseases that exist today. When a condition is rare, it is unlikely that there will be federal funding to support…
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