The Atypical HUS Foundation

VIDEO Topics

 

 

aHUS CLINICAL Channel

Physicians and researchers from the USA, France, the UK, and other nations offer information about atypical HUS. 

Click HERE  to view the Atypical HUS CLINICAL Channel 

YouTube Channel of The Atypical HUS Foundation

Rare Disease Day videos, videos from the University of Iowa aHUS Family Conferences, Patient and Family videos, and MORE

Click HERE  to view the YouTube Channel of The Atypical HUS Foundation


2014 aHUS Conference - the University of Iowa

Clinicians and researchers present information from the 2014 aHUS Family Conference at the University of Iowa.

*  Dr Carla Nester's topic:  aHUS Diagnosis, Treatment, and New Horizons    

View  Dr. Nester's presentation  (length approx. 37 mins)

 

*  Dr. Christie Thomas' topic:  Transplantation for aHUS: Before & After  

View  Dr. Thomas' presentation   (length approx. 42 mins)

 

*  Dr. Richard Smith's topic:  The Complement System Made Simple 

Vie Dr. Smith's presentation  (length approx. 36 mins)

*  Fengxiao Bu's topic:  Current Research on aHUS  

View  Fengxiao Bu's presentation   (length approx. 13 mins)

*  Nicolo' Borsa's topic:  Genetic Testing Process  

View  Nicol' Borsa's presentation   (length approx. 16 mins)

*  Dr. Jody L. Jones' presents a clinical psychologist's view of the impact of a chronic disease on the patient and  their family.  Resource List, too!

Rare Disease Challenges: Support for Patients & Families  (length approx. 16 mins)

Video's Resource List for Social, Emotional and Family Support plus helpful tips for friends and co-workers!  www.bit.ly/RareDiseaseResources

 

 

 

 

 2011 aHUS Conference - the University of Iowa

Clinicians and researchers present information from the 2011 aHUS Family Conference at the University of Iowa.

*  Dr Carla Nester's topic:  Definition of aHUS, Diagnosing aHUS, Overview of Complement    

View  Dr. Nester's presentation  (length approx. 27 mins)

 

*  Dr. Christie Thomas' topic:  Treatment of atypical HUS:  Plasmatherapy, Eculizumab (Soliris), Options for ESRD, Transplants, Data from published studies/reports   (length approx. 33 mins)

View  Dr. Thomas' presentation   (length approx. 33 mins)

 

*  Dr. Richard Smith's topic:  Atypical HUS, Genetics, and the Complement Cascade 

Vie Dr. Smith's presentation   (length approx. 32 mins)

 

 

aHUS Video Clip Library, from the 2011 aHUS Conference - the University of Iowa

Culled from the full presentations, these topic-specific video clips less than 5 minutes capture clinicians and researchers as they present information at the 2011 aHUS Family Conference at the University of Iowa.

The index features such headings as 'Diagnosing aHUS' and 'aHUS and Genetics' in addition to a variety of clips dealing with treatment options.

Click below to access links to dozens of topic-specific video clips.

click here to download the Microsoft Word document

click here to download the PDF document

 

 

Patient & Family Videos

Videos and slideshows created by aHUS patients and their families. 

Click HERE  to view Patient & Family Videos and Slideshows

 

RARE DISEASE DAY is recognized globally on the last day of February each year. 

WATCH these video messages, created especially for Rare Disease Day by patients and their families.

 

 

IN REGARD TO MEMBERSHIP REQUESTS

To ensure proper processing of your membership, please make sure to set your email filters to accept emails, from info@atypicalhus.org.

The Atypical HUS Foundation is an all-volunteer organization. Please allow at least 72 hours for an email response confirming your membership request.  If you do not receive an email, please check your spam folder or email directly to info@atypicalhus.org

Membership is open to patients, family, friends, caregivers research and medical personnel.

WELCOME - JOIN US!

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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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...

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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