The Atypical HUS Foundation

August 2014 Blog Posts (8)

UPDATE: "Potential New Treatment" Forum Launches

 

     Information about rare disease research and studies can be difficult to unearth, so a key component of our efforts at www.atypicalhus.org is our commitment to act as a hub connecting information and resources for aHUS patients, families, and caregivers.  Our Atypical HUS Foundation is dedicated to providing an objective, independent network of information…

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Added by Linda Burke on August 31, 2014 at 8:03pm — 1 Comment

Who cares about that Atypical HUS Foundation?

     Well, you should…..if you have any interest in the needs and concerns of aHUS patients, caregivers, and families.   Our foundation is an independent, non-profit organization dedicated to providing information, insight, and support to all those challenged with this rare disease.  We serve patients of all ages and provide a networking hub for aHUS information across the United States and throughout the world, acting as a ‘founding community’ for…

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Added by Linda Burke on August 28, 2014 at 1:08am — 2 Comments

Ohio was the place to be this weekend!!

Wow! What a weekend at the Columbus Ohio meetup! It was the biggest meetup I have ever been to. I have so much to share and I will very shortly as soon as I get caught up on some rest. But just a quick glimpse into the weekend, global genes had everything planned out perfectly. Dr. Cataland was amazing, approachable and a VERY knowledge doctor in our world of Ahus. Patients of Dr. Cataland are very blessed.



I was blessed to meet so many new Ahus families who came to the meet up as… Continue

Added by Jill Ziegler on August 24, 2014 at 1:16pm — 7 Comments

Disability

When Cole was first diagnosed in March with Ahus the hospital social worker suggested that I apply for Disability benefits for Cole so I started the process. Last week they called and said his case was being moved to a different office and they were still reviewing it. I was wondering if anyone has experience with social security benefits is it something that is usually granted to kids with Ahus?? Is it worth fighting for?

Added by Alison Montes on August 20, 2014 at 8:00pm — 3 Comments

aHUS and High School

Life is tough. High school is tough. Both can be even tougher when you fight a disease such as aHUS.

I was home schooled for most of my education. I liked it, but there came a time when I wanted to enjoy my high

school years. I wanted to go to football games, meet people that would become life long friends. This was a huge

step for anyone, and it was huge for me.

I am on dialysis, and have been since I was 4. When I started going to high school, I was on PD, which…

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Added by Jonathan H. Kolp on August 13, 2014 at 10:17am — 4 Comments

SEAN AND HIS PART IN aHUS RESEARCH

Just up from this new activity box there is a video of Prof. Judith Goodship. Standing next  to her is Sean who Tim Goodship referred to in his recent webinar as being  a survivor of a family blighted by aHUS and which led him to research aHUS and discover the Complement Factor H mutation. Sean has been on dialysis for 25 years but has recently had a successful transplant, supported by eculizumab. He is a Geordie and lives in Newcastle upon Tyne ( my profile pic is taken on the Tyne Bridge!)…

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Added by Len Woodward on August 12, 2014 at 3:38pm — 4 Comments

Iowa AGENDA for aHUS Family Conference, Oct. 24-26th

 

     The University of Iowa and the Foundation for Children with Atypical HUS announce the 2014 aHUS Family Conference to be held at the University of Iowa on October 24-26, 2014.

     JOIN US for the only aHUS conference in the United States to offer multiple medical presentations from 6 aHUS experts and covering high-interest  topics such as mutations, disease…

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Added by Linda Burke on August 6, 2014 at 9:00pm — No Comments

NEW- Must See aHUS Video!

     On July 31st, the global aHUS community was invited to participate in ‘real time’ with a webinar offered by Dr. Tim Goodship, a world leader in aHUS research.  Hosted by EURORDIS, and offered on the RareConnect’s dedicated aHUS global webpage, Dr. Goodship gave a comprehensive overview of aHUS information. …

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Added by Linda Burke on August 4, 2014 at 12:46am — No Comments

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