"Thanks for posting what you've found, we were also assuming that if this project continues it is several years down the road and not something for consideration anytime soon as the process is very long from approval of patents to trials to…"
Frank Reyniers's Discussions
MUBODINA?
4 Replies
Found this... http://www.prath.eu/project.htm Is this something new or just a Eculizumab clone? there is still hope! Cheers,Frank Continue
Started this discussion. Last reply by Cheryl Biermann Dec 1, 2011.
Frank Reyniers's Page
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Linda Burke replied to Frank Reyniers's discussion MUBODINA?"I've just posted a blog that might provide some factual info...http://atypicalhus.ning.com/profiles/blogs/regarding-mubodina"
Cheryl Biermann replied to Frank Reyniers's discussion MUBODINA?"After reading through the paper, I forwarded this on to an expert, Nathan's doctor Belsha, to quote him,
"This is interesting. It looks like another antibody created to blockC5, being developed by a group of investigators in…"
Cheryl Biermann replied to Frank Reyniers's discussion MUBODINA?"It couldn't be a clone because Alexion would have the rights for a certain number of years before generics could be used. This is the first I've seen on this, thanks for the post, we will look into it."
Frank Reyniers posted a discussionMUBODINA?
Found this... http://www.prath.eu/project.htm Is this something new or just a Eculizumab clone? there is still hope! Cheers,Frank See More
Jodi Kayler commented on Frank Reyniers's blog post Remission and Soliris?"Hi, my son is Coen. More of his story is available, but here's the short version: Coen had ongoing AHUS from when he was 11mos to 6 years old. There is no known defect. Although, he had some severe relapses during that time, there were periods…"
Cheryl Biermann commented on Frank Reyniers's blog post Remission and Soliris?"Yes, have you read Bryan Hearn, Skyler Burke and Coen Kaylor's stories? Coen's story would be closest to your son's experiences. I encourage you to look these blogs up, they would be from the beginning of this site under…"
Frank Reyniers posted a blog postRemission and Soliris?
Hi all,My son Milan, who has aHus without known defect, is in a state of remission for almost 3 years now (he becomes 6 next month).His kidney's are detoreating and a transplant is nearing. (he is on a diet without dialysis)Here my question: Can Soliris improve his kidney function and so delay the need for a transplant?Thanks in advance.Frank See More
Nicolas left a comment for Frank Reyniers"Bonjour Frank, je suis en France. N'hésitez pas à me contacter.
Hello Frank, I'm in France. Feel free to contact me."
Linda Burke left a comment for Frank Reyniers"Welcome to our online aHUS community, where we share information, inspiration, and insight into this ultra-rare disease. As you consider treatment for Milan, I have little knowledge of the healthcare system in Belgium- but this website should…"
Profile Information
- Birthday
- February 23
- Do you have a friend or family member diagnosed with aHUS?
- Yes
- Are you medical personnel or an aHUS researcher with an interest in aHUS issues?
- No
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- no
- My child ( or myself as a patient) is best described as:
- Tested but Results are Inconclusive
Frank Reyniers's Blog
Remission and Soliris?
Hi all,
My son Milan, who has aHus without known defect, is in a state of remission for almost 3 years now (he becomes 6 next month).
His kidney's are detoreating and a transplant is nearing. (he is on a diet without dialysis)
Here my question: Can Soliris improve his kidney function and so delay the need for a transplant?
Thanks in advance.
Frank
Posted on November 13, 2011 at 4:37pm — 2 Comments
Comment Wall (2 comments)
- At 3:12pm on October 9, 2011, Nicolas said…
Bonjour Frank, je suis en France. N'hésitez pas à me contacter.
Hello Frank, I'm in France. Feel free to contact me.
- At 12:27am on July 12, 2011, Linda Burke said…
- Welcome to our online aHUS community, where we share information, inspiration, and insight into this ultra-rare disease. As you consider treatment for Milan, I have little knowledge of the healthcare system in Belgium- but this website should be a good place for you to connect with other aHUS patients to express your concerns and to seek opinions. Feel free to explore the site and add posts.
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...
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