nefrohema.cz
Sdružení pacientů se vzácnými nefrologickými a hematologickými onemocněními :: MÉDIA
http://www.nefrohema.cz/media
Sdružení pacientů se vzácnými. Nefrologickými a hematologickými onemocněními. Pořad ČT Medicína pro 21. století o onemocnění aHUS www.ceskatelevize.cz/ivysilani/10175805663-medicina-pro-21-stoleti/212563231050007-atypicky-hemoliticko-uremicky-syndrom/titulky. Zpráva idnes.cz o problematice vzácných onemocnění, mimo jiné aHUS http:/ zpravy.idnes.cz/jak-platit-za-leky-na-vzacne-nemoci-dtp-/domaci.aspx? C=A130509 174702 domaci hv. Mezinárodní web věnovaný onemocnění PNH (česky) www.pnhsource.eu. Zpráva o lé...
chetsjourney.blogspot.com
Chet's Journey: November 2008
http://chetsjourney.blogspot.com/2008_11_01_archive.html
Friday, November 21, 2008. Subscribe to: Posts (Atom). View my complete profile. Chet loves to get comments and messages, but kids, please be safe in posting. Only use your first name when you leave him comments, and make sure it is okay with your parents first. St Jude Children's Research Hospital. Chet's Aplastic Anemia Story. Simple theme. Powered by Blogger.
chetsjourney.blogspot.com
Chet's Journey: July 2008
http://chetsjourney.blogspot.com/2008_07_01_archive.html
Thursday, July 24, 2008. You might need a tissue for this. Here is the story behind the song. ETA. this is anAustralian band called Hillsong. :0). Wednesday, July 23, 2008. No major updates, just some random thoughts. So here is my specific prayer list regarding Chet at the moment:. That he remain stable and not experience anymore close calls or pain. That he not develop anymore of the serious conditions this progressive disease will eventually cause if he doesn't have a successful BMT. I haven't written...
chetsjourney.blogspot.com
Chet's Journey: December 2009
http://chetsjourney.blogspot.com/2009_12_01_archive.html
Wednesday, December 2, 2009. Chet has been having frequent headaches. We mentioned this to his doctor at his last count check a few weeks ago. (I didn't have a chance to post about that one yet.) She was worried that he might be developing some blood clots in his brain, which is a progressive complication of the PNH. She scheduled him to come back for an MRI, so we headed back down there on Sunday. He did have to wear the same lovely gown as the actor on the TV. We still don't have the results back, but ...
pnhcommunity.org
PNH Resources
http://www.pnhcommunity.org/resources
Next PNH Community Event. Speak with a registered nurse to get free disease education, coverage support, and access to the PNH Buddy program. Contact a nurse now. Having a rare condition can sometimes make you feel alone. However, many organizations exist to provide you with the support you need and can connect you to others who share your experience. Here are some organizations that offer information, advice, and support. National Organization for Rare Disorders (NORD). National Institutes of Health.
hemoterapi.com
HEMOTERAPİ
http://www.hemoterapi.com/TR,26/bilgi-sayfalari.html
Prof Dr. Muhit Özcan. Prof Dr. Önder Arslan. Bize Sorun Cevapları Öğrenin. 2 Lösemi Lenfoma Miyelom Hastaları Kongresi. Türk Hematoloji Derneği Halk Sağlığı. PNH Research and Support Foundation. Trombosit Hastalıkları ve ITP için. Platenet Disorder Support Association. National Children’s Leukemia Foundation. Bilgi Bankası Genel Bilgiler. Hematopoetik Kök Hücre Nakli. Bize Sorun Cevapları Öğrenin.
chetsjourney.blogspot.com
Chet's Journey: Low Counts
http://chetsjourney.blogspot.com/2008/11/low-counts.html
Friday, November 21, 2008. Subscribe to: Post Comments (Atom). View my complete profile. Chet loves to get comments and messages, but kids, please be safe in posting. Only use your first name when you leave him comments, and make sure it is okay with your parents first. St Jude Children's Research Hospital. Chet's Aplastic Anemia Story. Simple theme. Powered by Blogger.
chetsjourney.blogspot.com
Chet's Journey: Report from the 26th
http://chetsjourney.blogspot.com/2008/10/report-from-26th.html
Monday, October 6, 2008. Report from the 26th. I haven't had a chance to update from our last visit, so thank you for being patient! We checked in on Friday morning, and went through the regular routine of blood draws, measurements, and making sure his head wasn't too big. Then he put on the shirt and asked me to take his picture in it. I thought that was sweet of him. Beth's birthday was the 26th while we were there, so she laid claim to his balloons. I can't bring myself to pray that he gets cured very...
chetsjourney.blogspot.com
Chet's Journey: October 2008
http://chetsjourney.blogspot.com/2008_10_01_archive.html
Monday, October 6, 2008. Report from the 26th. I haven't had a chance to update from our last visit, so thank you for being patient! We checked in on Friday morning, and went through the regular routine of blood draws, measurements, and making sure his head wasn't too big. Then he put on the shirt and asked me to take his picture in it. I thought that was sweet of him. Beth's birthday was the 26th while we were there, so she laid claim to his balloons. I can't bring myself to pray that he gets cured very...
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