The Atypical HUS Foundation

February 2015 Blog Posts (11)

Alexion Supports Patient Organizations on Rare Disease Day 2015

World Rare Disease Day, recognized annually on the last day of February, encourages patients and their families, medical professionals, researchers, government officials, and companies developing treatments for rare diseases to join together to focus attention on rare diseases as a public health issue.

     On Saturday, February 28th 2015, Rare Disease Day will bring heightened attention to the challenges facing patients affected by approximately…

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Added by Linda Burke on February 27, 2015 at 12:56pm — No Comments

San Antonio RSVP Deadline Extended: March 13-14th now offers 2 aHUS Regional Meetings

BREAKING NEWS....

 

San Antonio TX, aHUS Meetup on March 13-14th

Global Genes just has extended the registration for their March 13-14th aHUS Meetup in SAN ANTONIO!  Last day to register is now Friday,…

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Added by Linda Burke on February 25, 2015 at 3:30pm — No Comments

Global aHUS News – New Minister for Health in Australia Could Be the Break They’ve Been Waiting For

Big news came out of Australia in January!  They have a new Minister for Health.  Her name is Sussan Ley.  This could be the break our Australian friends have been waiting for.  A chance to get rid of the restrictions on access to Soliris.  These restrictions include if someone is seen as in remission, they will not get it. They must relapse first. And anyone who started Soliris is only going to have access to Soliris for 12 months. They will need to relapse to in order to…

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Added by Jeff Schmidt on February 23, 2015 at 7:00pm — No Comments

Last day to sign up for San Antonio!

Good morning aHUS families. Who will be attending San Antonio the weekend of March 13? Today is the last day to sign up so please do so ASAP.



If you have not attended a regional meeting, this is an incredible opportunity to meet and ask doctors who specialize in aHUS. If you have attended meetings in the past, you know you can always learn more. We are so fortunate to have such a great foundation who puts these weekends together for us. Let's take advantage of this and sign up today.… Continue

Added by Diane schaller on February 23, 2015 at 10:18am — 1 Comment

NORD hosts 2015 aHUS Regional Meetings

NORD, the National Organization of Rare Disorders, has announced plans for their regional aHUS meetings across America for 2015.

The National Organization for Rare Disorders invites patients and caregivers/families affected by Atypical Hemolytic Uremic Syndrome (aHUS) to participate in these special events to meet other patients and speak with a medical expert.  Come together in a small…

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Added by Linda Burke on February 20, 2015 at 11:30pm — No Comments

Omeros posts positive results for first 3 aHUS patients on OMS721

Omeros, the manufacturer of OMS721, just released preliminary data this morning on the first three patients to be treated with OMS721.

Although the trial is open to patients with various types of thrombotic microangiopathies (TMA), the first cohort of 3 patients at the lowest dose all had aHUS.

All patients had improvements in platelet counts. LDH and…

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Added by Grace on February 19, 2015 at 8:28am — 2 Comments

March aHUS Meetups in San Antonio and Pensacola - RSVP Deadlines

     You can’t miss the first 2 aHUS Meetups hosted by Global Genes – San Antonio on 3/14 and Pensacola FL on 3/28.  Why?

      Dr. Rita Swinford , an aHUS medical expert, will give a presentation and then answer your questions in San Antonio, on March 14th.  Come share with friends, as Diane Schaller represents The Atypical HUS Foundation with her Saturday presentation in San Antonio and Anne Bruns shares her family’s aHUS journey at the Friday night welcome…

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Added by Linda Burke on February 13, 2015 at 1:00am — 1 Comment

pregnant after diagnosis

Im just enquiring for some of our members in Australia that are asking if i know of anyone getting pregnant after diagnosis either on or off Soliris... what are doctors recommendation around this? Thanks Kerri XX

Added by Kerri Grey on February 12, 2015 at 6:09am — 1 Comment

Global Genes Hosts aHUS Meetups Across America

Global Genes invites patients and caregivers/families affected by atypical Hemolytic Uremic Syndrome (aHUS) to participate in a series of 16 special regional events to meet others in the aHUS community and to hear a presentation with a physician experienced in aHUS diagnosis and treatment.  These aHUS Meetups will provide an opportunity for you to connect with other families challenged by atypical HUS, and to share…

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Added by Linda Burke on February 9, 2015 at 10:30pm — No Comments

Rare Disease Day- WE NEED YOUR Video Clips and State Resource Links

     Only a few short weeks remain until global Rare Disease Day on February 28th!   Join with others in the aHUS community to highlight the challenges that face the 1 in 10 Americans diagnosed with a rare disorder.

The Atypical HUS Foundation needs your help with 2 innovative awareness projects!  Alyssa Deffenbaugh is creating a video, aHUS Across America, to illustrate the many faces of aHUS patients, families and advocates. BUT…

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Added by Linda Burke on February 4, 2015 at 8:23pm — No Comments

Follow up - Our Friends in Ontario, Canada Need Our Help! - Part 2 (Posting on Facebook)

We’ve been helping our aHUS friends in Ontario Canada by sending their Health Minister Dr. Eric Hoskins emails with stories of how Soliris has worked for us.  Dr. Hoskins had responded to a post I made on his Facebook page a while back by saying he is looking for evidence that Soliris works for aHUS like it does for PNH.



Now that we have given him the evidence he needs via our emails, I’m asking that you go to his Facebook page and leave a post for him…

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Added by Jeff Schmidt on February 2, 2015 at 1:19pm — No Comments

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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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