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This is now The Histio Blog: A Community Blog. We have had so many great guest writers over the years from our community, so we figured, let's have our community be the main voice of the blog.
One of the blog's main contributors is from Barb Adams, author of the histio children's books: "Someone I Know Has Histio," "Casey and the Messy Clean-up Crew" and "Hold on Henry."
If you have an idea for a blog post or want to write an upcoming post about your own, or a family member's histio experience, please email Peteryanefski@histio.org.
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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…
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…
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…
We speak to patients and families every day; brave, strong, resilient individuals who share their histio journey. The families and physicians we connect with are from all around the world…
On July 11-13, I attended the World Orphan Drug Congress in Boston, Massachusetts. This congress has taken place for several years now and brings together people from all cross-sections of…
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