The Atypical HUS Foundation

Doc to Doc Directory - Physicians who Advocate for the BEST CARE for aHUS Patients

Concerned about getting the best care possible for aHUS patients?

If your loved one has aHUS, The Atypical HUS Foundation provides a list of volunteer physicians experienced with aHUS diagnosis, treatment options, and multi-organ issues that may cause complications for the aHUS patient.  Let your doctor know about the Doc to Doc Directory.  This is a physician-to-physician service that ensures YOUR doctor, and the aHUS patient's entire care team, has access to the most current aHUS medical  information.

From our listing for the Doc to Doc Directory:

Physicians with expertise in aHUS diagnosis, treatment, and patient issues offer phone and/or email consultation with other medical personnel.  Top aHUS clinicians and researchers from across the USA, as well as Canada and the UK, provide information and physician outreach as a volunteer service striving to improve aHUS patient outcomes.

What can you do, as an aHUS patient, advocate, or caregiver?

Atypical aHUS is quite rare.   (In America, the rate of aHUS patients is estimated at 2 people per 1,000,000 population.  Current USA population is just over 320,000,000.)  Few doctors ever see a single case of aHUS in their career or within their practice, based on the small population affected by this rare disease.  In rather a 'double whammy' of unfortunate events, not only is aHUS one of the smaller rare disease populations, but atypical HUS can affect multiple organs with different complications, some of which can be life-threatening.

The Atypical HUS Foundation is dedicated to promoting improved patient outcomes on a number of levels, to include physician education.  To help you find important aHUS medical information, our organization collaborates with researchers, clinicians, biopharmaceuticals and others who deal with aHUS medical information within their professions.  Our organization supports patient education by compiling valuable aHUS medical and research information, pointing out its context and implications for patients, and posting it all here to make it more easily accessible to aHUS patients, caregivers, and their family.

'Top Docs' with experience and background in aHUS have volunteered to help others in the medical community learn more about atypical HUS diagnosis, treatment, and complications that might arise for aHUS patients.  They serve as volunteers in our Doc to Doc Directory because they can make a real difference in helping their fellow physicians!

Many doctors utilize this free, expertise by directly contacting those listed on our Home Page.  If you're not sure whether YOUR physician and care team has tapped other doctors for consults, advocate!  Consider whether you wish to  PRINT THE Doc to Doc Directory LIST and hand it to your doctor or care team, so that they always have an ‘aHUS top doc’ available for free consults. (URL is http://atypicalhus.ning.com/page/doc-to-doc-directory).

Be an advocate, let your doctor know that free consults with physician experienced in aHUS diagnosis, treatment, and aHUS complications are simply an email or a phone call away!

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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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