Blog

Welcome back to the blog! After a month off while we took more time to bring awareness to histio, we are back and ready to tell you all about what we accomplished in awareness month and what’s next. Starting off October, we have a guest writer on, our very own Melinda Atnip, Outreach Coordinator and head of the Ambassador Program, to present on the recent Histio Awareness Letter Writing Campaign that took place in September.

Take it away Melinda

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We would like to share the incredible success of our recent Histio Awareness Letter Writing Campaign, an initiative driven by the belief in the power of hope and education.

The Histio Ambassadors, a group of individuals representing various histiocytic disorders, united by a common purpose: to raise awareness about histiocytosis and educate medical communities nationwide. In our pursuit of this mission, we embarked on a letter-writing campaign to medical professionals during Histio Awareness Month, and the results have been amazing.

The Goal

Our motivation stems from a shared experience echoed by all of our ambassadors, regardless of their geographic location or specific histiocytic disorder. Far too often, they face a troubling reality: when first encountering medical professionals, none of them were familiar with histiocytosis. This lack of awareness about the condition often resulted in delayed diagnoses and uncertainty about treatment. 

Recognizing the need for a cohesive and easy-to-follow template, our ambassadors formed a dedicated letter writing committee. Collaborating with five histio team members and a lead histio physician, we crafted a template that simplified the process for all participants. This template encouraged individuals to condense their stories to one page, ensuring a concise yet impactful message. 

The Process

To make our campaign effective, we started by sharing our personal experiences in letters addressed to individuals within the medical community. Not limiting it to primary care providers and specialists, we also wrote to the many individuals who provide services to support those going through a rare disease diagnosis (nurses, child life specialists, hospitalists, etc.) 

In our template, we included a physician resource page featuring the most up-to-date brochures for each histiocytic disorder. This comprehensive resource enabled physicians to delve deeper into the specifics of histiocytosis, fostering better understanding and informed decision-making. 

Recognizing that not everyone may be comfortable crafting their personal letters, we offered the option for individuals to provide us with contacts, allowing us to write awareness letters on behalf of all histio patients and families. This approach ensured that no one was left behind in our mission to raise awareness. 

The Result

Through the month of September, as a united ambassador team, we collectively wrote 52 AWARENESS LETTERS! This achievement is a testament to the dedication and passion of our ambassadors, who tirelessly worked to make this campaign a success. 

Already, we have received news that one hospitalist is sharing our information with their entire team of physicians!

As we reflect on the impact of our campaign, we want to express our heartfelt gratitude to all those who supported us. We encourage you to continue using our letter writing template throughout the year for your personal awareness projects. Together, we can keep the flame of hope alive and continue to educate, inspire, and bring about change in the world of histiocytosis. 

In closing, we firmly believe that “HOPE is just a stamp away!”