Posts Tagged ‘Rare Disease’
Resilience 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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