Past Events (24)
April 14Saturday
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4th Annual Hike for Hyde
April 14, 2012 from 9am to 2pm – Sawnee Preserve Park Fun family day in honor of Hyde Talbot and Bryan Hearn Organized by Phyllis Ann Talbot | Type: fundraiser
March 24Saturday
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St. Louis Fundraiser - 2012 Trivia Night
March 24, 2012 from 6pm to 7pm – Carpenters Hall Join us for an evening of Fun, but most importanly, to raise funds for our future research efforts. Remember, 100% of what we do does directly to the Foundation! Where: St. Louis, MO When: Marc… Organized by Bill Biermann | Type: fundraiser
January 28Saturday
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Len Woodward
January 28, 2012 from 10:30am to 4:30pm – Holliday Inn Inaugural General Meeting of aHUSUK An opportunity for members to influence the plans and activities of the Patient and Families Support Group and to get information about aHUS from guest speakers. Organized by aHUSUK | Type: conference, and, charity, organisation
January 17Tuesday
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Parliamentary Seminar on aHUS in the UK
January 17, 2012 from 12pm to 2pm – Houses of Parliament A seminar for UK MPs, Peers, aHUS patients and others about aHUS, its treatment and the need for national commissioning and funding. Organized by aHUS Action UK | Type: awareness, seminar
October 7Friday
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2011 Parent Conference
October 7, 2011 at 6pm to October 9, 2011 at 7pm – University of Iowa 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… Organized by Bill Biermann | Type: research, and, socialize
September 18Sunday
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Blood Drive for Christopher Ferreira
September 18, 2011 from 10am to 2pm – Kids Gone Wild Together with Blood Centers of the Pacific we will host the first of (hopefully) many blood drives in honor of not just Christopher, but all who have ever needed or will be needing blood products. … Organized by Crystal Ferreira | Type: blood, drive
June 11Saturday
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aHUS Conference for Patients and Families- a UK First
June 11, 2011 from 10:30am to 4:30pm – Newcastle upon Tyne - UK, Center for Life, Join Dr. Tim Goodship at Newcastle upon Tyne for the UK's 1st Atypical HUS Conference on June 11, 2011. Details at www.aHUS.org.uk . The Center for Life (A Centre for World-Class Science) is the conf… Organized by Dr. Tim Goodship | Type: conference
June 4Saturday
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Jill's Kidneys Not Included 2011 Kidney Walk
June 4, 2011 from 8pm to 11pm – Rhodes College National Kidney Foundation Kidney Walk To register or donate: www.kidneywalk.org Look for Jill Ziegler and homestate Arkansas Look for Team "Kidneys Not Included" Organized by Jill Ziegler | Type: fundraiser/walk
May 15Sunday
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2011 Boston Kidney Walk
May 15, 2011 from 9:30am to 2pm – Franklin Park Zoo Annual National Kidney Foundation Walk - this chapter serves all of New England. We are back with our 'Jack of Hearts' team! Organized by | Type: walk
April 16Saturday
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3rd Annual Hike for Hyde (honoring Hyde and Bryan)
April 16, 2011 from 9am to 2pm – Sawnee Preserve Park We are doing it again! So excited for another fun family day at a great park! Organized by Phyllis Ann Talbot | Type: family, fun, day
Popular Event Types
- fundraiser (6)
- drive (4)
- blood (4)
- conference (2)
- and (2)
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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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NOTE: Our 'Send a Message" function on each Member's page allows for private discussion of personal content. As with any social network, be cautious about giving personal contact information (home email info, phone number) until you have an established relationship with another person, organization, or associated website.
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...
Help us fight the battle
Your tax-deductible purchase of one or more bracelets will directly fund research to help end the tragedy and heartbreak that aHUS families live with every day. Each bracelet has an appraised value of $825, but your purchase price is only $295.
Or you can donate a specific dollar amount-every dollar will help the Foundation for Children with atypical HUS atypicalHUS.50megs.com
Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Foundation for Children with Atypical HUS may be mailed to:
Atypical aHUS Foundation
19 Olde Colony Lane
Cape Elizabeth, ME 04107
For pearl bracelet orders, please allow extra time for processing checks.
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