US Hereditary Angioedema Association

Advances in Research
Pioneering Innovations in HAE Science

With the help of the US Hereditary Angioedema Association, seven (7) HAE therapies have completed clinical trials, received FDA-approval, and are now available to treat HAE. The HAEA continues to actively support all types of novel HAE research, particularly through the US HAEA Angioedema Center at UCSD. We also encourage pharmaceutical companies to continue to develop new and improve current HAE therapies. The HAEA takes an active role in patient recruitment for clinical trials. We conduct our own unique research, powered by our strong and united patient community, to demonstrate to insurers the quality of life and economic benefits that HAE medicines provide.

The HAE Association continues to advance HAE research, to benefit patients today, and make a brighter tomorrow for future HAE generations.

The US HAEA Angioedema Center at UC San Diego offers comprehensive care for patients with angioedema, state-of-the-art diagnostic tests and techniques, the latest available treatments, a full range of patient support programs, and cutting-edge angioedema research. The Angioedema Center, in partnership with the US HAEA, aspires to improve the lives of angioedema patients throughout the world.

The US HAEA Angioedema Center offers a unique "bench-to-bedside" approach to patient care and angioedema research. Our multidisciplinary team works together to determine the best treatment options available for each patient. Patients, along with their physician, decide on the best course of treatment. From research in genetics to the most advanced treatments, the Angioedema Center is at the forefront of angioedema research to benefit the patient community.

If you are interested in getting more information or setting up an appointment at the Center, contact our HAE Health Team,
or learn more about the U.S. HAEA Angioedema Center.

Scientific Registry - Advance HAE
Join your fellow patients in the HAEA's nationwide research Registry. You can participate in this patient-driven research effort simply by sharing a small blood sample and your clinical information. Become a member today and play a crucial role in scientific advances that make it possible for researchers to resolve the remaining mysteries of HAE and accelerate the advancement of future therapies. Together, we can Advance HAE!

Learn more... or Enroll in the Scientific Registry today to help us find a cure!

Clinical trials are studies in which people volunteer to test new drugs or devices. Clinical trials are crucial to learning whether a new treatment works and is safe for people. These kinds of studies are necessary to develop new treatments for serious diseases like HAE.

As new treatments are being developed, HAE patients will again be offered the opportunity to take part in these important studies. The future is bright when we all support future research through clinical trial participation.

Please return to this page often to check for clinical trial updates. Contact any of the HAEA Patient Advocates to learn about the seven FDA-approved HAE therapies currently available that can transform HAE patients' lives.

Important Information on Current Clinical Trials

There are over 25 active trial sites across the U.S. enrolling patients in the APeX-S study, a worldwide clinical research study to investigate the long-term safety of an investigational oral medication to prevent Hereditary Angioedema (HAE) attacks. There may be a site enrolling near you.

Furthermore, a new study has been announced to evaluate the safety and efficacy of repeated subcutaneous (SC) administration of Lanadelumab in preventing angioedema attacks in adolescents and adults with non-histaminergic angioedema with normal C1-INH, and in adults with acquired angioedema (AAE) due to C1-INH deficiency. Trial sites are beginning to open and are ready to enroll patients across the country.

Additionally, there is an ongoing, small scale study to evaluate the Safety, Pharmacokinetics, and Pharmacodynamics of Lanadelumab to prevent Hereditary Angioedema (HAE) attacks in pediatric subjects ages two (2) to twelve (12) years of age.

If you are interested in participating in any of these trials, please contact John Williamson here or by telephone at (972) 984-0621, to see if there is an active clinical trial site in your area.