Greetings from the US HAEA Angioedema Center,
We are currently on our way to Washington DC where Drs Zuraw, Riedl and I will be hosting the ‘Second International Conference on HAE with normal C1 Inhibitor’. Investigators from around the world will be attending to present their current research and insights. We are hopeful that we will be reporting soon on advancements in the diagnosis and treatment of HAE with normal C1 inhibitor. The HAEA was (as usual) at the forefront in organizing and sponsoring this important event.
We are starting to analyze the initial data from our study on the role of stress and HAE—thank you to all who have participated. Hopefully we will make sufficient progress to present some preliminary information at our upcoming HAEA Patient Summit in October. We hope that the outcomes of the study will advance our understanding of how ‘stress translates into swelling’ and pave the way for novel therapies. 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 look forward to sharing our progress with the angioedema community in the months to come. We welcome your feedback. We feel very fortunate to have the support of our staff at the Center, the HAEA and all of you.