The Atypical HUS Foundation

aHUS Global Survey – Update: Info as of April 2, 2016

aHUS Global Survey – Open through 15 April 2016

Share your aHUS journey, survey in 6 languages (for aHUS Patients & Pedi Caregivers):

http://www.ahusallianceaction.org/survey/

(reposted from the original Article on the aHUS Global Webpage At RareConnect)

 

     The 2016 aHUS global survey just launched in 2 new translations, now making this poll available in Japanese and Russian along with Italian, Spanish, French, and English versions.  Due to the rollout of these new additional languages, the 2016 aHUS poll will remain open through 15 April to encourage responses from aHUS adult patients and caregivers of pediatric patients.

 

     Patient and caregiver poll responses can provide better understanding and insights into aHUS diagnosis, treatment, and medical care from the patient perspective.  The 2016 global survey questions were suggested from various sources, to include topics from the June 2015 aHUS Alliance multi-national meeting of patient organizations in London,  online discussions across aHUS social media outlets, and interactions with aHUS researchers in conjunction with input from various interfaces within the aHUS arena. Additionally, some poll items were designed to help patient groups better understand the needs of their members and to explore the differences in care, diagnosis and treatment access around the world. 

 

     The 2016 aHUS global survey should provide an updated view to the 2014 RareConnect poll which centered on how patients and their families move through the process of obtaining a diagnosis, while also providing survey information about various impacts or consequences of the disease on their lives. (In partnership withRareConnect in 2014, with link below, had 214 respondents from 17 nations and responding to outreach in 6 different languages.) Additionally this survey information might also offer some insight into how patients might more fully engage with, or become informed about opportunities and advancements in aHUS research, studies, clinical trials, and aHUS registry efforts.

     As of 2 April 2016, here are select data from the global poll which will remain open through 15 April.  The 2016 aHUS global poll currently has had 180 respondents from patients or pediatric caregivers from 19 countries.  Pediatric caregivers were 47% of survey participants, with 53% of respondents identifying themselves as adult aHUS patients.  One survey question sought data related to months  of aHUS onset for patients, with seasonal onset distribution so far noted as:  Jan-March 24%, Apr-June 19%, July-Sep 24% and Oct-Dec onset period at 33% noted by respondents as of this interim survey update.

 

     Below are country participation rates so far, with additional information and links related to this aHUS global survey.   Access the 2016 aHUS Global Survey of Patients and Caregivers at: http://www.ahusallianceaction.org/survey/   

(Available in 6 languages:  Spanish, French, Italian, Russian, Japanese, and English) 

Follow the survey updates on Twitter at:   @aHUSallianceAct 

 

Country

# of Responses

% Percent of Total Responses

USA (United States of America)

75

42%

UK (United Kingdom)

40

22%

Canada

21

12%

France

6

3%

India

6

3%

Italy

6

3%

Australia

5

3%

Netherlands

3

2%

New Zealand

3

2%

Pakistan

3

2%

Germany

2

1%

Japan

2

1%

Turkey

2

1%

Belgium

1

1%

Brazil

1

1%

Bulgaria

1

1%

Cyprus

1

1%

Denmark

1

1%

Switzerland

1

1%

 

 

For MORE INFO:

 

Click this link: Mid-Point Survey Results (RareConnect blog), or see 

https://www.rareconnect.org/en/community/atypical-hemolytic-uremic-...

 

Click this link:  Launch of 2016 aHUS Global Surveyor see

http://atypicalhus.ning.com/profiles/blogs/ahus-global-survey-for-p...

 

Click this link:  2014 aHUS global poll, in partnership with RareConnect:  Results, Video- Webinar, and Commentary or see https://www.rareconnect.org/en/community/atypical-hemolytic-uremic-...

 

For questions regarding the survey, please contact info@ahusallianceaction.org

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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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...

CFH (Serum Complement Factor H) is a regulatory protein. The secreted protein product of CFH consists of 20 repetitive units named "short consensus repeats" or SCRs (each approximately 60 amino acids). In patients with aHUS the last 5 "pearls" in the twenty pearl strand protein, SCR16 - SCR20, should bind to protect cells but do not- they are defective in one or more of the last 5 SCR locations. If they cannot bind or stick to the kidney to protect that tissue, the platelets clump into clots that affect the glomeruli of the kidney -potentially causing acute renal failure.
  
• • • • • • • • • • • •
  
It is estimated that there are about 2 cases of aHUS in the U.S. per 1,000,000 of population, and about 60% of aHUS patients are diagnosed as children. The condition is potentially life threatening, and either can be chronic or can recur at intervals.
  
more factoids...

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Your donation of $295.for an aHUS pearl bracelet will directly fund research to help aHUSpatient and their families. Each bracelet has an appraised value of $925, and is offered with your gift of $295. Note:  For shipping outside the USA, please add $25. to cover international shipping costs.

(Note: Bracelets do not qualify as tax deductible donations under IRS regulations.)

Normally, aHUS pearl bracelets to be made-to-order and as such expect a 4 to 6 week window before your custom bracelet is shipped.  In a rush?  Contact info@atypicalhus.org with your request and details.

 

 Donations of a specific dollar amount are welcome-every dollar will help aHUS research efforts supported by The Atypical HUS Foundation at www.atypicalhus.org.


Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Atypical HUS Foundation may be mailed to:

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C/O Deborah Lewis
PO Box 333
Barnhart, MO 63012


For pearl bracelet orders, please allow extra time for processing checks. Questions about aHUS donations? Please email info@atypicalhus.org

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