EHE International Joins the Histiocytosis Association of America in Raising Awareness of a Rare Disease
Together with the Histiocytosis Association of America (HAA), EHE International is helping spread the word about a rare blood disorder called histiocytosis. The HAA and EHE have created a 115 square foot display window at 10 Rockefeller Plaza that will be featured for the entire month of July. “We hope to educate people about the disease, and encourage them to recognize and act on any Histiocytosis risk factors and warning signs they might discover,” said Deborah McKeever, President of EHE International.
“It is a privilege and an honor to be the recipient of such a generous donation of window space by EHE International. This will truly make a significant impact on the work we are doing on behalf of the over 4 thousand patients affected by histiocytosis worldwide,” said Beth Anne Miller, Chief Operating Officer and Director of Development of the HAA.
Histiocytosis is a rare blood disorder. People affected with histiocytosis produce too many dendritic histiocytes, a form of white blood cells found in healthy people and intended to protect the body from foreign materials and infection. In those with histiocytosis, however, these cells multiply excessively and accumulate in the body causing various problems including:
-- Skin Rashes or Ulceration -- Lung Dysfunction -- Bone Lesions -- Ear Infections -- Swollen Gums or Lost Teeth -- Diabetes Insipidus -- Female Reproductive Tract Dysfunction -- Dysfunction of Liver, Spleen or Lymph Nodes -- Gastrointestinal Issues -- Spinal Cord or Brain Lesions
Histiocytosis has been categorized as an “orphan” disease. This label is often given to diseases which have not been “adopted” by the pharmaceutical industry because it provides little financial incentive for the private sector to make and market new medications to treat or prevent it. The National Institute of Health’s Office of Rare Diseases states that, “an orphan or rare disease is generally considered to have a prevalence of fewer than 200,000 affected individuals in the United States.” Because histiocytosis is an orphan disease it receives almost no federal research dollars.
“The project will raise awareness among the public about the plight of rare diseases and the need for federal research funding,” said Jeffrey Toughill, President of the HAA.
Even after years of research the true cause of histiocytosis is still a mystery. What is known is that histiocytosis is not contagious nor is it thought to be hereditary. The rarity of histiocytosis makes its incidence difficult to assess. However, by drawing on research the following conclusions have been reached:
-- Histiocytosis affects about one in 100,000 people each year. -- Two out of three histiocytosis patients are female. -- 5% of adult patients have a delay of more than 10 years from onset of symptoms & diagnosis. -- 90% to 99% of adult patients with lung involvement are smokers. -- 69% of adult patients have multi-system involvement. -- Multi-system disease is associated with a 10% risk of fatal disease progression.
The HAA seeks to provide assistance to its members, patients and families dealing with histiocytosis through:
-- Educational Literature, -- Fundraising & Awareness Events, -- Educational & Support Meetings, -- Online Community, -- Physician Referral Network, and -- Resource & Networking Directories.
The Association seeks to promote scientific activity in regards to histiocytosis by:
-- Funding clinical & basic scientific research projects, -- Distributing clinical treatment protocols, -- Serving as the US Data Collection Center for the LCH-III Clinical Trial, -- Managing a medical organization focusing on the research & treatment of histiocytosis, and -- Educating medical professionals around the world through medical symposia.
About EHE International
Since 1913, EHE has been the recognized leader in employee and individual Preventive Healthcare Plans (PHP) specifically designed for the early identification of preventable disease and risk factors; clinical management of health findings; referral resources; and personal coaching intervention programs of adverse lifestyle behaviors associated with poor nutrition, physical inactivity, and smoking. It’s nationally available PHP is a comprehensive, integrated approach to preventive healthcare for the reduction and management of future medical claims expense, increased productivity, and overall improved quality of life.
For more information, contact EHE International, 10 Rockefeller Plaza, 4th Floor, New York, New York 10020; 212.332.3702; www.EHEINTL.com.
About the Histiocytosis Association of America
The Histiocytosis Association of America, a non-profit organization registered with the Federal Government, is dedicated to helping those dealing with the effects of rare histiocytic disorders by providing a variety of educational programs and emotional support services. In addition, the Association promotes examination of histiocytic disorders through scientific and medical research, with the aim of establishing better treatments, a cure, and ultimately, prevention of the diseases.
For more information about histiocytosis or the programs of the HAA please visit www.histio.org or call 1-800-548-2758.
Contact: Bianca Muccia Danielides Communications Phone: 212-319-7566 Email: Email Contact
SOURCE: Histiocytosis Association of America