Hereditary Angioedema Resources

If you or someone you know has HAE (Hereditary Angioedema) it is helpful to get as much information as possible about the disorder. Talk with your doctor about other sources of information, including other healthcare professionals who can help you learn more about HAE (Hereditary Angioedema) and how it may impact you and your family. You can also contact the following organizations and foundations for more information about HAE (Hereditary Angioedema).

BraveCommunity.com is intended for residents of the United States. Because rare diseases impact a small number of patients, the community of support and education often spans the collective efforts and experiences of patients, families, medical professionals, and researchers across the world. The following links may provide education about rare diseases that may be helpful to you. These sites may be subject to policies, regulations or laws that are different from those in the United States. Shire HGT is not responsible for the content on these sites except for those sites operated by Shire HGT. They may have different policies (including privacy policies) than BraveCommunity.com and may contain information that reflect local standards, including medical standards of care different from those in the U.S. You should discuss any information you receive on the internet about medical care with your doctor before making medical decisions.

U.S. Resources

American Academy of Allergy, Asthma, & Immunology
555 East Wells Street
Suite 1100
Milwaukee, WI 53202
Phone: 800-822-2762
info@aaaai.org
www.aaaai.org
Ben's Friends
www.bensfriends.org
Children's Rare Disease Network
24701 La Plaza
Suite 201
Dana Point, CA 92629
Phone: 949-305-8656
info@rareproject.org
www.crdnetwork.org
Genetic Alliance
www.geneticalliance.org
Hereditary Angioedema Association
Seven Waterfront Plaza
500 Ala Moana Blvd., Suite 400
Honolulu, HI 96813
Phone: 866-798-5598
generalinfo@hereditaryangioedema.com
www.haea.org
Immune Deficiency Foundation
40 West Chesapeake Avenue
Suite 308
Towson, MD 21204
Phone: 800-296-4433
idf@primaryimmune.org
www.primaryimmune.org
National Institute of Allergy and Infectious Diseases
6610 Rockledge Drive
MSC 6612
Bethesda, MD 20892-6612
Phone: 866-284-4107
www.niaid.nih.gov
National Organization for Rare Disorders (NORD)
55 Kenosia Avenue
PO Box 1968
Danbury, CT 06813-1968
Phone: 203-744-0100
www.rarediseases.org
Patients Like Me
www.patientslikeme.com
Rare Project
www.rareproject.org

International Resources

Canadian Organization for Rare Disorders (CORD)
www.cord.ca
EURODIS - Rare Diseases Europe
www.eurodis.org
HAE International Community
www.haei.org

Publications

Here is a short bibliography of a few examples of published articles about HAE (Hereditary Angioedema) to read or to share with your doctor. You can use the Searching Medical Literature tutorial to learn how to search for the latest articles in medical journals, and be sure to ask your doctor for any new publications. This list is not a complete list of available published information about these topics.

  • Allergy Asthma Proc. 2010 Sep;31(5):407-14. The humanistic burden of hereditary angioedema: Impact on health-related quality of life, productivity, and depression. Lumry WR, Castaldo AJ, Vernon MK, Blaustein MB, Wilson DA, Horn PT.