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As HAE becomes more widely understood, the resources available to patients will continue to increase. Here are some sites to visit (Note: by clicking any of the links below, you will leave HAE Hope):
HAEA.org: This nonprofit organization offers information about hereditary angioedema and forums where you can connect with other patients.
National Organization for Rare Diseases (NORD): This organization focuses on the issues patients face when they're living with a rare disease, including hereditary angioedema.
Food and Drug Administration (FDA): Find information on clinical trials and new drug approvals.
Development & Approval Process (Drugs): Learn about the drug approval process.
ClinicalTrials.gov: You’ll find details on which treatments are currently in clinical trials.
Agostoni A, Cicardi M. Hereditary and acquired C1-inhibitor deficiency: Biological and clinical characteristics in 235 patients. Medicine 1992; 71:206-15.
Bork K, Barnstedt S, Koch P, Traupe H. Hereditary angioedema with normal C1-inhibitor activity in women. Lancet 2000; 356:213-7.
Bork K, Fischer B, Dewald G. Recurrent Episodes of Skin Angioedema and Severe Attacks of Abdominal Pain Induced by Oral Contraceptives or Hormone Replacement Therapy. Am J Med 2003; 114:294-8.
Bork K, Hardt J, Schicketanz K-H, Ressel N. Clinical Studies of Sudden Upper Airway Obstruction in Patients With Hereditary Angioedema Due to C-1 Esterase Inhibitor Deficiency. Arch Intern Med/163. 2003; 163:1229-1235
Bork K, Meng G, Staubach P, Hardt J. Hereditary angioedema: New findings concerning symptoms, affected organs, and course. American Journal of Medicine 2006; 119:267-74.
Bork K, Siedlecki K, Bosch S, Schopf RE, Kreuz W. Asphyxiation by laryngeal edema in patients with hereditary angioedema. Mayo Clin Proc 2000; 75:349-54.
Bouillet L, Longhurst, H, Boccon-Gibod I, et al. Disease expression in women with hereditary angioedema. Am J Obstet Gynecol. 2008;199(Issue 5), 484.e1-484.e4
Bowen T, Cicardi M, Bork K, Zuraw B, Frank M, Ritchie B, et al. Hereditary angioedema: a current state-of-the-art review, VII: Canadian Hungarian 2007 International Consensus Algorithm for the Diagnosis, Therapy, and Management of Hereditary Angioedema. Ann Allergy Asthma Immunol 2008; 100:S30-40.
Frank MM. Urticaria and Angioedema. In: Goldman:Cecil Textbook of Medicine. 22 ed. Philadelphia: W.B Saunders Co.; 2004. p. 1611-4.
Frank MM, Gelfand JA, Atkinson JP. Hereditary angioedema: the clinical syndrome and its management. Annals of Internal Medicine 1976; 84:580-93.
Gompels MM, Lock RJ, Abinun M, Bethune CA, Davies G, Grattan C, et al. C1 inhibitor deficiency: consensus document. Clinical and Experimental Immunology 2005; 139:379-94.
Goring HD, Bork K, Spath PJ, Bauer R, Ziemer A, Hintner H, et al. [Hereditary angioedema in the German-speaking region]. Hautarzt. 1998 Feb;49(2):114-22.
HAE frequently asked questions. United States Hereditary Angioedema Association Web site. Available at: http://www.haea.org/. Accessed Jan 7, 2009.
Heymann W, Rossy K. Angioedema, Hereditary. Emedicine Web site. 2008. Available at: http://emedicine.medscape.com/article/1048994-overview. Accessed Jan 7, 2009.
Hereditary Angioedema. AARP website. Retrieved September 18, 2009 from: http://symptomchecker.aarp.org/adamcontent/hereditary-angioedema/2
Information for consumers: approved drugs. Food and Drug Administration Web site. Available at: http://www.accessdata.fda.gov/scripts/cder/drugsatfda/index.cfm. Accessed Jan 13, 2010.
Levy JH, O'Donnell PS. The therapeutic potential of a kallikrein inhibitor for treating hereditary angioedema. Expert Opin Investig Drugs 2006; 15:1077-90.
NORD policy position: insurance reimbursement for orphan drugs. National Organization for Rare Disorders (NORD) Web site. Available at: http://www.rarediseases.org/nord/news/policy/insur. Updated Oct 22, 2004. Accessed Jan 6, 2009.
Nzeako UC, Frigas E, Tremaine WJ. Hereditary angioedema, a broad review for clinicians. Archives of Internal Medicine 2001; 161:2417-29.
Pappalardo E, Cicardi M, Duponchel C, Carugati A, Choquet S, Agostoni A, et al. Frequent de novo mutations and exon deletions in the C1inhibitor gene of patients with angioedema. J Allergy Clin Immunol 2000; 106:1147-54.
Sullivan K, Winkelstein J. Genetically Determined Disorders of the Complement System. In: Scriver C, Beaudet A, Sly W, et al., eds. Metabolic and Molecular Bases of Inherited Disease. New York: McGraw Hill, 2001:4785-815.
Zuraw BL. Clinical practice. Hereditary angioedema. N Engl J Med 2008; 359:1027-36.
Zuraw BL. Hereditary angiodema: a current state-of-the-art review, IV: short- and long-term treatment of hereditary angioedema: out with the old and in with the new? Ann Allergy Asthma Immunol. 2008;100(Suppl 2):S13-S18