Welcome to the Histiocytosis Association
We truly are a rare community. Our citizens include histio patients of all ages, parents, family members, friends, physicians and scientists from around the world.
We are rare because a diverse group of individuals with a common cause has banded together to support one another and work together to help find a cure. We are rare because histiocytic disorders are rare – so rare that they do not receive a high priority for government-funded research.
When my daughter Bethany was diagnosed in 1984, my family felt completely alone. Our vital need for a support community led to the creation of the Histiocytosis Association, ensuring that no other family would ever feel that way. The journey to a world free of histiocytic disorders is a journey we are all on together. And the Histiocytosis Association is here to walk beside every patient and every family every step of the way. Our community is an extended family, and as such we do whatever we can for that family, just like you. What do you do for your family? You do whatever you can.
Since its formation in 1986, the Histiocytosis Association has been dedicated to raising awareness about the histiocytic disorders in a concerted campaign to increase public and government involvement in the search for a cure. We have been vigorously committed to providing educational and emotional support to families and patients – helping them understand and cope with the effects of these diseases. We’ve been successful in establishing incredibly effective networks of patients and physicians, and brought these communities together to share knowledge. And we remain tireless in our efforts to identify and fund critical research projects around the world – research that continually leads to more effective treatments and ultimately, a cure.
I challenge all of the citizens within our rare community to continue harnessing our collective power – working together to achieve our vision of a world free of histiocytic disorders. You can join in the fight to save and support our histio warriors in many ways – volunteer for the Histiocytosis Association, raise funds for research and programs, organize a Circle of Friends meeting, build awareness, involve your company in the battle, plus a multitude of other possibilities.
When people ask me what I do for a living, I proudly tell them, "I help save lives, and you can do the same." Please take action! Call or write us and help to eliminate these diseases from the face of the earth.
Jeffrey M. Toughill
President and CEO