The Cavan Tommy Hoey Trust (IRELAND) Says Work to make 2010 NORTHERN IRELAND RARE DISEASE DAY WE NEED MORE FUNDING FOR XLP, HLH, SCREEN FOR RARE DISEASES

Spread the Word about Rare Histiocytic Disorders.

Disease Quick Facts:

· Juvenile Xanthogranuloma (JXG) is a rare benign histiocytic disorder.

· JXG is characterized by groups of yellow, red, or brown papules or nodules (known as lesions).

· JXG may be present at birth, but most often arises in infancy.

· Erdheim-Chester disease (ECD) is a rare form of non-Langerhans-cell histiocytosis.

· ECD is also known as Erdheim-Chester syndrome or polyostotic sclerosing histiocytosis.

· The first case of ECD was reported by W. Chester and Jakob Erdheim in 1930.

· ECD affects predominantly adults, with a men age of 53 years.

· Rosai-Dorfman (RD) disease is a rare disorder characterized by over-production and accumulation of histiocytes in the lymph nodes of the body.

· RD most often affects the lymph nodes of the neck (cervical lymphadenopathy) however, in rare cases can affect the following: central nervous system, eyes, upper respiratory tract, skin, and head and neck.

· The exact cause of RD is unknown. Some researchers suggest that the disorder may be caused by an infectious agent.

· Symptoms of RD are large, painless lymph nodes in neck, underarms, or groin (can be the size of a grapefruit), along with a fever.

It’s time to spread the word about these diseases and we need your help!

To learn more about histiocytosis visit www.histio.org