2011 Parent Conference
Event Details
Time: October 7, 2011 at 6pm to October 9, 2011 at 7pm
Location: University of Iowa
City/Town: Iowa City, Iowa
Event Type: research, and, socialize
Organized By: Bill Biermann
Latest Activity: Oct 6, 2011
Event Description
SAVE THE DATE:
The University of Iowa has graciously volunteered to host the 3rd "Atypical HUS Parent Conference" . This is a great way to meet the top medical Professionals while socializing with parents at the same time. Here are the specifics:
Friday, Oct 7th Early Arrival 7:00pm Meet and Greet
Dinner sponsored by the Foundation
Saturday, Oct 8th The Confererence at the University of
Iowa: (All Meals Provided)
Sunday, Oct 9th Departure
Note: you may elect to attend any portion: No cost to attend the conference, and Friday eve meal and all saturday meals are covered.
Details to follow
Comment Wall
Comment
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Comment by Linda Burke on October 6, 2011 at 11:27am -
Hi all,
I'll be arriving at Cedar Rapids airport around 4 pm on Friday, and going to the Baymont Inn. Open to sharing a taxi, if your travel plans permit.....
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Comment by Jodi Kayler on September 28, 2011 at 7:23pm -
Below is a complete conference agenda:
October 7
7:30 Evening Welcome Dinner for Parents and Researchers from University of Iowa and Alexion (Dinner at restaurant named “One Twenty Six”)
October 8
8:00 Coffee and registration
8:15 Welcome, Bill Biermann
8:20 What is aHUS and how is it diagnosed?, Carla Nester
8:50 Genetics and aHUS – the complement system made simple, Richard Smith
9:20 The treatment of aHUS in patients with native kidneys and with an allograft, Christie Thomas
9:50 Break with tour of the lab, Carla Nishimura
10:20 Eculizumab - clinical trial results, Camille Bedrosian
10:50 Eculizumab – One-Source Program, Deborah Katz
11:10 Current research on aHUS, Tara Maga
11:30 Moving forward together – a questionnaire for families and physicians, Carla Nester
11:50 Lunch
12:30 Panel Discussion
1:30 Closing remarks, Bill Biermann
1:30 Parent Meeting (Linda Burke, Phyllis Talbot and Bill Biermann)
3:30 Meeting adjourns
7:00 Parent only dinner at 7:00 at Givannis
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Comment by Svetlana Finley on September 27, 2011 at 5:24pm -
Thanks Linda, I got one too, does anyone want to share room? I guess they have 2 beds and i don't need 2 LOL
See you all in 2 weeks
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Comment by Linda Burke on September 27, 2011 at 5:01pm
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I've just booked by my room at the Baymont (via phone at is 319-337-9797) .... they do have a AAA member discount in effect.
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Comment by Svetlana Finley on September 20, 2011 at 9:19am
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It looks like no one yet thinking where to stay? I guess we should wait another week to get hotel booked?
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Comment by Kathy Yates on September 13, 2011 at 9:12pm -
Just wanted to know if everyone plans on staying at the Baymond? If so, I will book my registration.
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Comment by Svetlana Finley on September 11, 2011 at 12:35am
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Bill send out e-mails about this hotel for $85 a night
Baymont Inn & Suites Coralville/Iowa City
200 6th Street
Coralville, IA 52241
Phone: 1 (319) 337-9797
What do u think?
I have mine booked too i am arriving at 2:40 on Friday.
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Comment by Linda Burke on September 8, 2011 at 11:49pm
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Just booked my flight to the conference (connector is US Air FLT 7818 Chicago ORD- departs at 2:55 pm, arriving CID Cedar Rapids at 3:52 pm).
Anyone found good hotel rates?
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Comment by Svetlana Finley on September 5, 2011 at 10:55am
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What hotel everyone planing to stay?
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Comment by Alyssa Deffenbaugh on August 7, 2011 at 11:49pm -
When I flew into Iowa, we flew in Moline, which was MUCH cheaper and then we just drove a car in.
WELCOME - Friends, Family Members, Patients, and Researchers - JOIN US!
The Foundation for Children with Atypical HUS encourages patients and investigators to share information and explore options/resources as we work together to gain insight into this rare complement disorder. By increasing contact opportunities with researchers and medical personnel interested in helping the aHUS community, our stories foster a better understanding of atypical hemolytic uremic syndrome.
Sharing information, inspiration and support for one another, we seek to gather together people and knowledge as we strive to improve the lives of patients and families dealing with a diagnosis of aHUS.
NEW DIAGNOSIS OF aHUS?
Be proactive! Get the medical basics of aHUS, what lab values to monitor, and areas of concern...check out the "aHUS Bootcamp" and "About aHUS" tabs at the top of this page!
If your doctor has never treated a case of aHUS, please print out our 'Doc to Doc Registry' and ask him/her to contact a physician versed in the complexities of aHUS and new options for 2011 genetic testing and treatment.
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Did you know...
• • • • • • • • • • • •
It is estimated that there are about 300 cases of aHUS in the U.S., and it is most common with young children. The condition is life threatening and either can be chronic or can recur at intervals.
more factoids...
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