Patient Resources

HAEA.org wins the 2009 AAAAI Distinguished Layperson Award.
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The US Hereditary Angioedema Association works dilligently to provide various services to the HAE Patient Community which include the following:

Lead the way to find a cure for HAE
Ensure that patients have access to newly approved drugs which include the two C1-Inh products that have recently been FDA-approved:
- Cinryze, approved for prevention of HAE attacks.
- Berinert, approved for acute facial and abdominal HAE attacks
- Kalbitor, approved for treating acute attacks in patients 16 yrs and older
Ensure that HAE patients are connected to HAE-knowledgable physicians through our physician referral program
Refer HAE patients to on-going clinical trial programs which may bring more treatment choices in the future
Provide means for patients to communicate to each other through our message forum and email list
Educate physicians and patients about all aspects of HAE

Patient Services Representatives

For urgent assistance, please call:
Donna Davis (808) 216-1029 or
Michelle Williamson (972) 814-5205

For other inquiries, contact the following:

HAEA Patient Services Representative
Regional Contact Information

Donna Davis, Director of Patient Services and Clinical Programs
(808) 216-1029

Region - 1 Michelle Williamson, Assist. Dir. Of Patient Service and Clinical Programs
(972) 814-5205
(Region 1 includes - Alaska, Colorado, Washington DC, Hawaii, Illinois, Kentucky, Missouri, New Mexico, Nevada, South Dakota, Utah)

Region - 2 Lois Perry, Patient Services Representative
(559) 259-0572
(Region 2 includes - California, Iowa, Maine, Mississippi, Montana, Oregon, Virginia, Vermont, West Virginia)

Region - 3 John Williamson, Patient Services Representative
(972) 984-0621
(Region 3 includes - Arizona, Idaho, North Dakota, Pennsylvania, South Carolina, Texas, Wyoming)

Region - 4 Sally Urbaniak, Patient Services Representative
(904) 826-6700
(Region 4 includes - Connecticut, Delaware, Florida, Massachusetts, New Hampshire, New York, Rhode Island)

Region - 5 Jenny Barnes, Patient Services Representative
(252) 585-0763
(Region 5 includes - Alabama, Arkansas, Georgia, Louisiana, Michigan, Minnesota, North Carolina, Oklahoma)

Region - 6 Candi Fuqua, Patient Services Representative
(308) 627-4586
(Region 6 includes - Indiana, Kansas, Maryland, Nebraska, New Jersey, Ohio, Tennessee, Washington, Wisconsin)

For Clinical Trial Referrals, Contact Patient Services/Clinical Programs Representative, John Williamson
(972) 984-0621

Misc. Resources

www.HAEi.org
International Patient Organization for C1 Inhibitor Deficiencies.

C1-inhibitor concentrate home therapy for hereditary angioedema: a viable, effective treatment option
Economic and political factors have led to the increased use of home therapy programmes for patients who have traditionally been treated in hospital. Many patients with hereditary angioedema (HAE) experience intermittent severe attacks that affect their quality of life and may be life-threatening. These attacks are treated with C1-inhibitor concentrate which, for most patients, is infused at the local hospital. Home therapy programmes for HAE are currently being established. This paper reviews the extent of use of these programmes and summarizes the advantages and potential disadvantages of the concept so far.