August 2015 News From The Center

Aug 15, 2015

Greetings from the US HAEA Angioedema Center,

We hope that all of you are looking forward to the patient summit in October. The program looks wonderful and engaging. We will be presenting results of the research that you all participated in at our last summit. There will be some new studies that we need your help with as well. The continued partnership with the US HAEA and all of you will lead us to a brighter future.

For those of you with HAE with normal C1 inhibitor we are looking forward to reporting progress ofour second international conference on this topic next month. Again in partnership with the US HAEA, investigators in this area from around the world will be meeting to discuss the latest research findings and new initiatives. Progress has been made but much more is needed.

I would like to thank those of you who have called in to participate in our study of the role of stress in HAE. We are also trying to determine if some patients may have developed PTSD as a consequence of HAE. We would like to encourage all of you to consider joining the study.  All HAE patients are welcome to participate. The goal of the study is to begin to dissect the role of stress in HAE, including: how HAE causes stress, and how stress worsens HAE.  We believe that this is an important but neglected topic that could ultimately lead to novel management strategies that reduce HAE severity and improve quality of life. The study is completely anonymous and would not affect any of your ongoing care. It is the sort of research that we need your participation to reach the next horizon of care for HAE. Just in case you would like to join I have put the contact number and instructions for you below:

First, you should call (858) 657-5335 and leave a message with your name, type of HAE, email address,telephone number and the best time for us to return your call. One of our investigators or our study coordinator will speak with you to explain the study and be sure that all of your questions and concerns are answered prior to signing the consent. If you are interested in participating, then we will mail you materials including the consent. Once you sign the consent and return it in the self-addressed stamped envelope that we provide, you will be enrolled in the study.

We welcome your feedback regarding better ways that we could serve the needs of the angioedema community. We feel very fortunate to have the support of our staff at the Center, the US HAEA and all of you. We will be sharing our progress in months to come.

Warm Regards,

Dr C

 


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