Advocacy and Awareness


Countless people are still unaware of what histiocytosis is and the effect it can have on our families and loved ones. Raising awareness for histiocytosis means spreading the word and educating our communities about all histiocytic disorders. The Histiocytosis Association is committed to raising awareness for histiocytosis, but we need your help!  With Histio Warriors like you, we can stand together to ensure that histiocytosis is no longer unknown. Be sure to check out our awareness month page – how you can get involved and make a difference! You can also see pictures of our Histio Warriors in action by checking out our Awareness Photo Gallery and reading important updates below.


September is Histiocytosis Awareness Month

Every September, the Histio Community joins together to raise awareness for histiocytosis proactively. The Histiocytosis Association has compiled some fun and easy ideas on how you can raise awareness. Let’s get started!

Rare Disease Day - February 28, 2014

Rare Disease Day is an annual, international advocacy effort to globally recognize the challenges of living with a rare disease. Families, communities, and nations face these challenges when they deal with the medical and health effects of rare diseases. Rare Disease Day is celebrated each year on the last day of February and this year it was observed on Friday, February 28, 2014.

This is a time of year when our voices can be heard louder and stronger. The estimated 30 million people affected by rare diseases in the US will rally together to raise awareness for ALL rare disorders.

Check out how the Histiocytosis Community can help spread awareness for Rare Disease Day.


Histio Warrior Speaks at NORD Anniversary Gala

Ian Brown, a 7-year-old Histio Warrior, was invited to speak and to present an award at the National Organization of Rare Disorders (NORD) Anniversary Celebration.  Read more...


Awareness Photo Gallery

See Histio Warriors in action! Check out images from past successes with Histiocytosis Awareness Month, Rare Disease Day and more.

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