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2011 SESSION
WHEREAS, Langerhans cell histiocytosis, hemophagocytic lymphohistiocytosis, xanthogranuloma, Erdheim Chester disease, Rosai Dorfman disease, and pulmonary eosinophilic granuloma are a group of rare diseases that affect both children and adults; and
WHEREAS, these diseases are considered “orphan diseases,” meaning they affect fewer than 200,000 people per year in the United States; and
WHEREAS, these diseases occur because of the overproduction of a certain cell in the body and wherever these cells accumulate, they cause “cancer-like” damage; and
WHEREAS, although these diseases are not a cancer, the pain and suffering of patients can be just as severe as that caused by the more prevalent diseases that receive a high priority for federal research funding; and
WHEREAS, patients with these diseases can suffer damage to their central nervous system, brain, skin, bones, liver, lungs, and spleen; and
WHEREAS, some patients can experience a single lesion that goes into remission while others may have several sites of involvement that can be chronic and debilitating; patients with extensive damage to their body may not survive; and
WHEREAS, patients with this disease may be treated with chemotherapy, surgery, and/or radiation; however, there is no known cure and the goal of treatment is to cause the disease to go into remission; and
WHEREAS, increased funding to the National Institutes of Health is crucial to enable research into these diseases; and
WHEREAS, the Histiocytosis Association of America is the only nonprofit organization in the world that is working to raise awareness and provide educational and emotional support to patients and families while also funding peer-reviewed research to lead to better treatments and a cure; and
WHEREAS, through the hard work of families and friends, the Histiocytosis Association of America has been able to facilitate the funding of 135 peer-reviewed research grants seeking better treatments and a cure; and
WHEREAS, research into these disorders not only offers hope to the many patients and their families but also offers the possibility of learning more about other prevalent diseases in the process; and
WHEREAS, designating September as “Histiocytosis Awareness Month” in Virginia will encourage health care providers to learn more about these diseases; encourage the National Institutes of Health and related institutes to expand their rare disease initiative; and support increased research for all histiocytic disorders; and
WHEREAS, the designation will also give special recognition to the families and friends who have worked tirelessly to help the Histiocytosis Association of America raise awareness of these diseases and provide educational and support programs while also funding peer-reviewed research leading to better treatments and a cure; now, therefore, be it
RESOLVED by the House of Delegates, the Senate concurring, That the General Assembly designate September, in 2011 and in each succeeding year, as Histiocytosis Awareness Month in Virginia; and, be it
RESOLVED FURTHER, That the Clerk of the House of Delegates post the designation of this month on the General Assembly’s website.