Cure Sanfilippo Inc. / Chronic Illness Inc / Pennsylvania CheckOrphan Children’s Medical Research Foundation Inc. / The XLH Network Inc. / Related Disorders Partnership / /
Country
United States / /
Facility
University of Pennsylvania CheckOrphan Children’s Medical Research Foundation / /
Congress / Honorable Henry Waxman / Ranking Member Energy & Commerce Committee United States House of Representatives Washington / University of Pennsylvania CheckOrphan Children’s Medical Research Foundation / Honorable Frank Pallone / Ranking Member Energy & Commerce Committee Subcommittee / MPS Children Sanfilippo Foundation for Children Sarcoma Alliance Sarcoma / Foundation of America Save Babies Though Screening Foundation Shwachman Diamond Syndrome Foundation Solving Kids / Histiocytosis Association Hope4Bridget Foundation Hypertrophic Cardiomyopathy Association / Foundation Dravet Syndrome Foundation Dravet.org Drew’s Hope Research Foundation EveryLife Foundation / Have IIH iBellieve Foundation / Nicholas Foundation Pachyonychia Congenita Project Paget Foundation for Paget / National Adrenal Diseases Foundation / Cures Patient Power Periodic Paralysis Association / Abigail Alliance for Better Access / Potentials Foundation PrimordialDwarfism.com Race For Adam Foundation RARE Project Russell-Silver Syndrome Support Ryan Foundation / FDA / Jonah / MPD / International Society for Mannosidosis and Related Diseases / Pompe Foundation / Batten Disease Support and Research Association / Health United States House of Representatives Washington / V Cancer Klippel-Trenaunay Support Group Kurt+Peter Foundation LGBT Cancer Project LGMD2I Research Fund Life Raft Group Lymphangiomatosis & Gorham's Disease Alliance Lymphatic Malformation Institute MADISONS Foundation MAGIC Foundation Malecare Cancer Support Manton Center / National MPS Society / Canadian PKU & Allied Disorders Center for Orphan Disease Research and Therapy / Midwest Asian Health Association / /
Support Accelerated Approval of Drugs for Ultra-Rare Diseases to Benefit Vulnerable Patients, Promote Biotechnology Innovation and Stimulate Job Growth in the United States January 4, 2012 The Honorable Fred Upton, Chair