Posts Tagged ‘Rare Disease’
A 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 MoreAction in the Face of Grief from Rare Disease (HLH)
Maire soothed her to sleep like she always had; she sang The Rainbow Song to her. They sang it together as Lils drifted off to sleep. That was the last time Maire heard her daughter’s voice.
Read MoreBreakthrough for Histiocytosis: Cobimetinib Approval by the FDA
You may have heard the exciting news, that on November 1st, 2022, Memorial Sloan Kettering Cancer Center (MSK) announced that the U.S. Food and Drug Administration (FDA) approved the oral MEK inhibitor drug cobimetinib (Cotellic®) for the treatment of adult patients diagnosed with histiocytic neoplasms (HN).
Read More8 Years of International Collaboration from Seed Funding
Collaboration noun. – The action of working with someone to produce or create something. A common part of our daily lives, and a critical part of advancing research for histiocytosis…
Read MoreHighlights from this year’s meeting of the Histiocyte Society
This is part 2 of our series recapping the events of the 38th Annual Histiocyte Society meeting. Click here for part 1. Every 3 years there is a passing of…
Read MoreResilience in Rare: The Other Half of the Battle
In this post we will be focusing on a subject that is deeply important to those with Histiocytosis and other rare disorders. Resilience. To speak on this topic, our Strategic…
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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