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SolirisCurrently an aHUS patient using or considering treatment with Soliris? Please add your voice to this Forum!Several members of this website… Started by Linda Burke in SolirisLatest Reply |
aHUS Business Cards and FlyerBusiness CardsAttached is a template for aHUS Calling Cards (Business Cards) that can be used to help guide others to the Atypical HUS webs… Started by Jodi Kayler in UncategorizedLatest Reply |
Current research & presentations: for patients and healthcare providersHello all, I'd like to create a place where current research articles can be posted and sorted by topic. If you encounter a published stud… Started by Joy Lewis O'Brien in UncategorizedLatest Reply |
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SolirisCurrently an aHUS patient using or considering treatment with Soliris? Please add your voice to this Forum!Several members of this website… Started by Linda Burke in Soliris |
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May 18 Reply by Svetlana Finley |
Anti Factor H AntibodiesHi Everyone, I'm a new member in the group - my 5 year old son Jeremy was diagnosed with aHUS in September last year. In January we were… Started by Michele Haymes in Uncategorized |
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May 9 Reply by Svetlana Finley |
Check upsHow frequently should I be seeing my hematologist/oncologist? Should I be having blood tests done regularly? I don't have a doctor/specia… Started by Lannette Yorgason in Soliris |
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May 5 Reply by Svetlana Finley |
Current research & presentations: for patients and healthcare providersHello all, I'd like to create a place where current research articles can be posted and sorted by topic. If you encounter a published stud… Started by Joy Lewis O'Brien in Uncategorized |
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Apr 18 Reply by Joy Lewis O'Brien |
The FutureHi everyone!!! I came across this article and I thought it could spark some discussion and hopefully could be something in the near futur… Started by Donna Kolp in Uncategorized |
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Apr 16 Reply by sabrina kiernan |
UK aHUS PatientsAt such a crucial time in the UK with regards to getting funding for eculizumab it is important for patients and their families to do as mu… Started by Lisa Barker in Soliris |
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Apr 7 Reply by Lisa Barker |
Split liver in ahus kidHello members . Now I have created the ahus assosiation in Spain . By the moment only know 7 people and there is 253 ahus cases in Spain .… Started by maria vicenta carratala rios in Soliris |
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Mar 22 Reply by Len Woodward |
aHUS Family History and North DevonJust as a deviation from the current activity in the UK in getting eculizumab for the treatment of all aHUS patients who need it, I am sta… Started by Len Woodward in Uncategorized |
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PrayersWas thinking that we needed a place to put special requests for prayer for our little ones, ourselves, our outlooks, etc. I know for me pe… Started by Christy in Uncategorized |
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Mar 12 Reply by Linda Burke |
Post Soliris and/or Post Transplant by the numbersI know most of our "numbers" are posted in various Forums, primarily under "Soliris", so one of our goals will be centralizing the number… Started by Bill Biermann in Soliris |
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Mar 5 Reply by Cheryl Biermann |
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.
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.

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