We Need Your Help

Current medical literature includes confusing and often conflicting data about the effectiveness and side effects of anabolic steroid medicines (danazol, winstrol/stanozolol, oxandrolone, methyltestoterone) that are used by many of our HAE patients.

The HAE Association is conducting the largest scale study of HAE patients ever attempted. The study is accessible over the internet and is totally anonymous. Our goal is to collect scientifically valid data that will once and for all provide accurate information regarding the safety, effectiveness, and side effects of HAE medicines.

Your participation in this important effort will help to improve the lives of all HAE patients as well as provide a brighter future for our children! And it is easy to participate - the study is on the internet, user-friendly, and totally anonymous.

Below, we provide some simple instructions that will allow you to participate

Who should participate? All of you!

We need every adult (19 years or older in the states of Alabama and Nebraska, or 18 years or older elsewhere) who has HAE to fill out the on-line survey-- this includes patients who have:

never taken steroids,
took them at some point, but stopped taking them,
are still taking them

Again - we desperately need ALL HAE friends to participate--even those who have never taken steroids. The data from this particular group of HAE friends will provide the basis for making vitally important comparisons.

What you can do to ensure success!

We believe the information from this study will ensure that doctors can better assess the HAE treatments that they prescribe. We want to provide you, the patient, with scientifically valid data that you and your doctor can use to put together an HAE treatment plan that best suits YOUR needs. We can achieve this goal ONLY if you participate in the study.

Just as important, make sure all of your immediate family members and relatives with HAE also participate

You are the key to this study's success!

We certainly understand that HAE friends' lives are hectic and time is a precious commodity. However, we are hoping you share our view that contributing to a project designed to provide scientifically valid information that will lead to better treatment decisions is worth an hour (maybe less) of your valuable time.

Together we have already made a real difference in what treatments are available for all HAE patients. HAE friends, let's continue working together in our quest for a better future for us and our children.

Participating in the study is easy! Here is all you need to do:

Please contact Donna Davis, Director of Patient Services and Clinical Programs at 808-216-1029 or Janet Long at 508-212-9757.

You will be provided with a password. Then please go on line to https://www.keysurvey.com/survey/196857/280d/ and enter that password where prompted.

Remember, together we can make a difference! Call today!