SPONSOR:	Rep. Scott & Sen. Bushweller
	Reps. Baumbach, Bennett, Heffernan, Q. Johnson, Kowalko; Sens. Ennis, Hocker

HOUSE OF REPRESENTATIVES

147th GENERAL ASSEMBLY

HOUSE CONCURRENT RESOLUTION NO. 11

RECOGNIZING HISTIOCYTIC DISORDERS AS RARE AND IMPACTFUL DISEASES WHICH REQUIRE INCREASED RESEARCH FUNDING. 

WHEREAS, Hemophagocyctic Lymphohistiocytosis (HLH) and other histiocytic disorders such as Langerhan’s Cell Histiocytosis, Juvenile Xanthogranuloma, Eosinophilic Granuloma and Erdheim-Chester Disease are rare, life threatening immunodeficiency diseases that affect people of all ages and ethnic groups; and

WHEREAS, the reported prevalence of HLH is 1 in 150,000; and

WHEREAS, HLH usually affects the bones, it can cause enlargement of the liver and spleen and at least half of all patients with HLH will experience inflammation of the brain which can lead to various significant neurological problems; and

WHEREAS, the only HLH cure is a bone marrow transplant; and

WHEREAS, these disorders are deemed “orphan or rare” diseases resulting in little public awareness and demand to find cures.

NOW THEREFORE:

BE IT RESOLVED by the House of the 147^th General Assembly of the State of Delaware, the House concurring therein, that the members of the Delaware General Assembly encourage increased public awareness about the causes and nature of these diseases in order to promote stronger efforts to develop cures for those afflicted by them.

SYNOPSIS

This House Concurrent Resolution recognizes histiocytic disorders as serious orphan or rare diseases which affect 1 in 150,000.  Further, this resolution emphasizes the lack of public awareness about these diseases and encourages strong efforts to develop cures.