2008 HAE National Conference

October 17-19, 2008
Chicago Airport Marriott

Dear HAE Friends:

Please grab a pen and get ready to mark your calendars!

The imminent approval of C1 Inhibitor (the world-wide gold standard treatment for hereditary angioedema) provides HAE friends with a unique opportunity to

assess their current treatment regimen, and
consider how this new therapy (or other medicines currently being tested) might help to improve control over HAE symptoms, or provide an alternative with less side effects than anabolic steroids.

The HAE Association wants to ensure that everyone in our patient community has all the information needed to make an informed evaluation of C1 Inhibitor as well as other new options that may soon be available.

As a result, we will devote much of our forthcoming 2008 National Patient Conference and International Leadership Forum to helping HAE friends answer all of their HAE treatment -related questions.

The 2008 National Patient Conference and International Leadership Forum will take place at the Chicago Airport Marriott during the weekend of October 17th - October 19th.

So please plan to join us in Chicago so you can

meet fellow HAE Patients from throughout the US and the world,
hear HAE patient advocates from other countries describe how they use C1 Inhibitor to control their HAE,
Interact with US patients who have had experience with C1 inhibitor and the other drugs being tested in the United States,
get answers to questions about how you can get access to new medicines when they are approved,
find out what help will be available to ensure your insurance company will pay for new medicines, and what financial programs are available for HAE friends who might need co-pay or other assistance.
spend as much time as you would like asking all of your HAE-related questions to world class HAE scientists/physicians,
have all of your meals provided for free, and
learn about the HAE Association's current projects and plans to fund HAE research, expand our network of trained patient services experts , and establish a Patient Registry that will provide the type of data scientists need to find a cure.

The HAE Association has negotiated an extremely favorable deal for rooms at the Marriott Airport-only $94.00 a night plus tax. There is a free shuttle service that will take you directly to the hotel.

All meals on Saturday and breakfast on Sunday morning are included as part of the $25 registration fee.

In addition, the HAE Association will host a Welcome Reception on Friday evening.

Hotel reservations can be made by calling 800 228-9290 and asking for the HAEA ORD Medical Conference or going online to www.marriottohare.com and typing "HAEHAEA" in the space labeled group code.

Once you have made your hotel reservations, please visit the HAE Website, to fill out the conference attendance form.

We want to do whatever possible to ensure any HAE friend interested in attending the conference is able to do so. Accordingly, we will provide financial assistance to HAE friends who otherwise could not afford to join us in Chicago. For more information, about the conference or the HAEA's financial assistance program contact the HAEA's Director of Operations--Dennis DeMarinis at den@haea.org.

We look forward to seeing all of our HAE friends in Chicago!

Warmest regards to all,

Tony Castaldo
President, US HAE Association

Contact Information
phone: 866-580-8178

Conference Agenda

Friday, October 17th
1:30pm	Conference Registration Desk Opens
6:00pm – 7:30pm	Welcome Cocktail Reception
Saturday, October 18th
7:00am-8:00am	Breakfast
8:00am-8:30am	"Exciting Times for the HAE Patient Community", Welcome/Opening Remarks by HAEA President Anthony Castaldo. Brief Introduction of Pharmaceutical companies.
8:30am-9:30am	Keynote Address by Dr. Marcel Levi, Professor of Medicine at the University of Amsterdam and Chairman of the Department of Medicine at the Academic Medical Center of the University of Amsterdam. “Decades of safe and effective use of C1 inhibitor for treating and preventing HAE attacks in European patients; and the effectiveness and safety of home infusion.”
9:30am-9:45am	Break
9:45am -10:45am	Lev Pharmaceuticals: Cinryze® brand of C1 inhibitor. Now that approval appears imminent, Lev Pharma will discuss its program to support patient access to Cinrzye®
10:45am -11:45pm	CSL Behring: Approval of CSL's C1 Inhibitor Product, Berinert® also appears imminent. CSL will discuss its program to support patient access to Berinert®.
11:45am –12:00pm	Professor Bruce L. Zuraw, Medical Advisor, US HAE Association. Brief presentation of Top Line Results--The HAE Association’s study of the safety and effectiveness of C1 inhibitor home infusion.
12:00pm-1:30pm	Lunch—Presentations by members of HAE International’s Executive Committee on HAE therapy in their countries. HAE Friends are invited to interact with Pharmaceutical companies at designated tables.
1:30pm-2:30pm	Dyax Corporation: Favorable results of DX-88 EDEMA 4 trial and timetable for FDA licensing.
2:30pm – 3:00pm	Pharming NV Recombinant C1 Inhibitor Rhucin®: Successful trial results and timetable for regulatory approval
3:00pm-3:15pm	Break
3:15pm – 3:30pm	Jerini: Discussion of efforts to bring Firazyr® into the US
3:15pm – 3:30pm	Jerini: Discussion of efforts to bring Firazyr® into the US market.
3:30pm – 4:15pm	Time for patients to interact with Pharmaceutical companies at designated tables.
4:15pm – 4:30pm	Short presentation by Dr. Zuraw on the HAE Association’s Scientific Registry
4:30pm – 6:00pm	Ask the HAE experts: World Class HAE Physicians/Scientists answer all of your HAE questions.
7:00pm	Dinner and entertainment
Sunday October 19th
8:00am – 9:00am	Breakfast
9:00am – 10:30am	Patients Only: HAE Association presentation on programs to benefit HAE patients: Enhanced HAE Patient Services and assistance working with doctors, pharmaceutical companies, and insurance providers, HAE Registry, research for a cure, fund raisers, volunteer network.
10:30 am	Conference Adjourns