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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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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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36 minutes ago Reply by Cheryl Biermann |
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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Jan 31 Reply by Cheryl Biermann |
Is there such a thing as "Atypical HUS Free" or "Remission periods"Hello All, The Foundation and the Scientific community are currently wrestling with the following topic: DOES ATYPICAL HUS GO INTO REMI… Started by Bill Biermann in Soliris |
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Jan 31 Reply by Cheryl Biermann |
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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Jan 30 Reply by Cheryl Biermann |
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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Jan 27 Reply by Len Woodward |
Seminar at House of Parliament Jan 17thHi i was wondering if anyone who was attending this had received their invite yet? Started by Lisa Barker in Soliris |
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Jan 20 Reply by Cheryl Biermann |
Taking the dread out of the hospital visitsHi, After speaking with one of our parents, I thought, well this would make a great forum for new parents! Who else has suggestions in m… Started by Cheryl Biermann in Soliris |
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Jan 18 Reply by debbie thelwell |
Soliris side effectsHappy New Year everyone! I have a question about soliris...I'm wondering if anyone has seen a significant change in hair loss. My sister st… Started by Jessica Rios in Soliris |
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Jan 5 Reply by Cheryl Biermann |
MUBODINA?Found this... http://www.prath.eu/project.htm Is this something new or just a Eculizumab clone? there is still hope! Cheers, Frank Started by Frank Reyniers in Uncategorized |
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Dec 1, 2011 Reply by Cheryl Biermann |
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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Nov 7, 2011 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 "About aHUS" tab 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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