The Atypical HUS Foundation

     The aHUS Alliance is pleased to announce that RareConnect will offer a webinar on 21 June at 11 am EST, with aHUS expert Dr. Christoph Licht to present analysis of the 2016 aHUS survey results. The aHUS global survey closed 15 April with 233 responses from 23 countries, responding in 6 languages.

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

     In collaboration with the aHUS Alliance, RareConnect will host a 21 June 2016 webinar focused on analysis and interpretation of data collected during the recent aHUS global poll which was open from Rare Disease Day (29 Feb) until 15 April 2016. The webinar presenter will be Canadian aHUS expert researcher and clinician Dr. Christoph Licht of Toronto’s Sick Children’s Hospital. Viewers worldwide can participate in this event at 11am (EDT) in Toronto and New York, 8am in Seattle USA (PDT), 4pm in London (BST), and 8:30pm in Hyderabad (IST).  Find the webinar time for your area here:  http://www.worldtimebuddy.com/

     All nations within the aHUS Alliance were invited to participateon this survey subcommittee, and were encouraged to be involved with multiple aspects of the 2016 aHUS global poll. aHUS adult patients and caregivers of pediatric aHUS patients worldwide were invited to participate, and though the survey is now closed, the 2016 poll questions are viewable at http://ow.ly/YR8JK. The 2016 poll was conducted with 6 language versions available to respondents: ENG, ES, FR, IT, RUS, and Japanese.

     Gathering information on the aHUS patient experience, this 2016 poll provided a way for the aHUS community worldwide to express concerns and give insight into the challenges of aHUS. The patient and caregiver poll responses provide better understanding and insights into aHUS diagnosis, treatment, and medical care. Data from this 2016 survey additionally offers 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.

      We appreciate the efforts of Dr. Christoph Licht and the RareConnect team to join in this multi-national effort and highlight aHUS poll information. Our special thanks the patients and caregivers who participated in the 2016 aHUS poll as well as those researchers, organizations, and advocates for their support. (FMI on the 2016 poll, see http://ow.ly/eHIw300arxa . A similar aHUS poll was conducted in 2014, with those results and the 2014 RareConnect webinar athttp://ow.ly/4n9k00.)

     Join us on 21 June 2016 at 11am EDT for this RareConnect webinar regarding insights and information from the 2016 aHUS global poll. Watch here and at links below for the details about webinar registration and survey result updates.

FMI and LINKS:

Follow the RareConnect webinar and the 2016 aHUS poll updates and on Twitter: @aHUSallianceAct

2016 aHUS Global Poll, view the Questions:http://www.ahusallianceaction.org/survey/. Contact:info@ahusallianceaction.org

Final survey results, and the archived RareConnect webinar, will be posted onwww.ahusallianceaction.org

aHUS Awareness Day is 24 September 2016: Follow on Twitter @aHUS24Sept

More About the aHUS Alliance: 
The aHUS Alliance, an umbrella group of 15 nations with aHUS patient groups, includes among their goals: supporting aHUS patient groups around the world, assisting national and global initiatives regarding information about medical and patient issues, providing and promoting the patient viewpoint, and improving interactions among all stakeholders involved with aHUS treatment and research.

 

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The Atypical HUS Foundation 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...

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...

Help us fight the battle

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:

The Atypical HUS Foundation
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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