Posts Tagged ‘Advocacy’
Ways 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 MoreA Tale of Three Conferences
Here at the Histiocytosis Association we ended April strong and kicked the month of May off with a bang! Between all of us, we have attended three conferences in the…
Read MoreNational Institutes of Health: Partners in the Fight
With histiocytic disorders being rare, awareness to not only the medical community but also the government level of drug development, research, and health is important for the Histiocytosis Association team.…
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 MoreA Flyers Histio Night Two Years in the Making
Slightly over a year ago, our former Communications Director started our first Histio Night at the Flyers in early 2022. Last week, we had the second annual Histio Night at…
Read MoreEpisode 025 – The 2022 HopeCast and Year End Update
On episode 25 of the Beyond the Diagnosis Podcast Kathy shares a replay of our HopeCast, originally broadcast on Giving Tuesday. Learn all about the accomplishments of 2022 and what’s…
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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