Professor Tim Goodship and aHUS
Professor Goodship from Newcastle University has been interested in atypical HUS for nearly twenty years. He describes the recent Patient Family conference t...
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Latest Activity
Linda Burke commented on Rob P's video
Living with aHUS in Spain
"Hi Mireya,
You are welcome to begin your 1st steps to create an 'aHUS in Spain' by making a special Forum on www.atypicalhus.org , or feel free to start a Forum en Espanol if you prefer. I admire your proactive…"
Rob P posted a videoLiving with aHUS in Spain
The Monfort family describes the situation for those affected by aHUS in Spain.
Rob P commented on Linda Burke's blog post Coming Attraction- June 11th aHUS family conference in the UK"Very inspirational meeting, check out my thoughts on it here:
http://www.rarediseasecommunities.org/en/community/atypical-hemolytic-uremic-syndrome-ahus/article/newcastle-patient-family-meeting
Can't wait for Dr. Goodship and his team to…"
Rob P posted a blog postInternational aHUS Community
Our friends in Italy and Spain we're having a conversation about Soliris side effects on the International aHUS Community here: http://www.rarediseasecommunities.org/en/community/atypical-hemolyt... Come share your experience in English and they can request for it to be translated by humans into Spanish and Italian. Also, there…See More
Rob P replied to Linda Burke's discussion Soliris"Our friends in Italy and Spain we're having a conversation about Soliris side effects on the International aHUS Community here:…"
NATALIE WALLACE left a comment for Rob P"Thank you Rob for taking an interest in aHUS. Our son Zach passed away 6 years ago from this disease and our son Ben, now 5 has been battling with it since he was 5 months old. We still do not know what factor he is missing. He has been tested for…"
maria vicenta carratala rios left a comment for Rob P" Do you Know when begin the clinicals trials to factor H in France.?"
Heather Still left a comment for Rob P"Welcome. So happy to see how this site has gained interest of researchers from around the world. "
Rob P left a comment for Cheryl Biermann"Hey Cheryl,
Hope you, Bill, and the kids had a nice Christmas. I got to see my Mom in Chicago and it was really nice being back in the US.
I am looking forward to 2011 and the chance to get more information in the hands of families affected by aHUS.…"
Cheryl Biermann left a comment for Rob P"Hi Rob, It is awsome to have you as a member, we look forward to working with you and EURORDIS! "
Profile Information
- Birthday
- June 15
- Do you have a friend or family member diagnosed with aHUS?
- No
- Are you medical personnel or an aHUS researcher with an interest in aHUS issues?
- Yes
- My child ( or myself as a patient) is best described as:
- Question Does Not Apply To My Situation
Introduction...
Hi, My name is Rob and I work with the European Rare Diseases Organization, EURORDIS. I am interested in learning more about aHUS and expanding access to information for patients and families.
Rob P's Videos
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Professor Tim Goodship and aHUS
Added by Rob P
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Living with aHUS in Spain
Added by Rob P
Rob P's Blog
International aHUS Community
Our friends in Italy and Spain we're having a conversation about Soliris side effects on the International aHUS Community here: http://www.rarediseasecommunities.org/en/community/atypical-hemolyt...
Come share your experience in English and they can request for it to be translated by humans into Spanish and…
ContinuePosted on May 17, 2011 at 6:00am
Comment Wall (6 comments)
- At 10:48am on January 23, 2011, NATALIE WALLACE said…
- Thank you Rob for taking an interest in aHUS. Our son Zach passed away 6 years ago from this disease and our son Ben, now 5 has been battling with it since he was 5 months old. We still do not know what factor he is missing. He has been tested for all the known factors so far. Research is so important to us because we still need answers. He gets FFP every 14 days, no kidney problems so far. I think the factor he has may not effect kidneys. Not sure if that is possible. Thanks again for all you are doing. Natalie Wallace
- At 10:14am on January 19, 2011, maria vicenta carratala rios said…
- Do you Know when begin the clinicals trials to factor H in France.?
- At 12:09pm on December 30, 2010, Heather Still said…
- Welcome. So happy to see how this site has gained interest of researchers from around the world.
- At 12:33pm on December 29, 2010,
Svetlana Finley said… - Welcome!!!!
- At 11:18am on December 29, 2010, Cheryl Biermann said…
- Hi Rob, It is awsome to have you as a member, we look forward to working with you and EURORDIS!
- At 11:25pm on December 28, 2010, Linda Burke said…
Hi Rob,
Thanks for all you and your EURODIS team mates do for those dealing with rare diseases - we look forward to learning more about initiatives that NORD and EURORDIS have collaboratively implemented for patients, families, and medical personnel.
WELCOME - Friends, Family Members, Patients, and Researchers - JOIN US!
The Foundation for Children with Atypical HUS 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.
************************
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 300 cases of aHUS in the U.S., and it is most common with young children. The condition is life threatening and either can be chronic or can recur at intervals.
more factoids...
• • • • • • • • • • • •
It is estimated that there are about 300 cases of aHUS in the U.S., and it is most common with young children. The condition is life threatening and either can be chronic or can recur at intervals.
more factoids...
Help us fight the battle
Your tax-deductible purchase of one or more bracelets will directly fund research to help end the tragedy and heartbreak that aHUS families live with every day. Each bracelet has an appraised value of $825, but your purchase price is only $295.
Or you can donate a specific dollar amount-every dollar will help the Foundation for Children with atypical HUS atypicalHUS.50megs.com
Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Foundation for Children with Atypical HUS may be mailed to:
Atypical aHUS Foundation
19 Olde Colony Lane
Cape Elizabeth, ME 04107
For pearl bracelet orders, please allow extra time for processing checks.
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