paroxysmal nocturnal hemoglobinuria (PNH)

T Cell Transcriptomes from Paroxysmal Nocturnal Hemoglobinuria Patients Reveal Novel Signaling Pathways

Author(s): 
Kohei Hosokawa, Sachiko Kajigaya, Keyvan Keyvanfar, Wangmin Qiao, Yanling Xie, Danielle M. Townsley, Xingmin Feng and Neal S. Young
Primary Author: 
Kohei Hosokawa
Journal Title: 
Journal of Immunology
Original Publication Date: 
Jul 2017

2017 March for Marrow NYC: Walk for PNH

Join us for the 2017 March for Marrow NYC: Walk for PNH! Lace up your sneakers and join hundreds of other walkers to raise awareness and funds for research and education for this very rare disease. Register as an individual walker, join an existing team, or start one of your own.

Event Date: 
Sun, 09/17/2017 -
10:00am to 1:30pm
Community Event Type: 

Minneapolis

Thank you for attending the 2017 Minneapolis Patient and Family Conference.

Event Date: 
Sat, 07/22/2017 -
8:00am to 3:30pm
Conference Event Type: 

Standardized High-Sensitivity Flow Cytometry Testing for Paroxysmal Nocturnal Hemoglobinuria in Children with Acquired Bone Marrow Failure Disorders: A Single Center U.S. Study

Author(s): 
Donohue RE, Marcogliese AN, Sasa GS, Elghetany MT, Redkar AA, Bertuch AA, Curry CV
Primary Author: 
Donohue RE
Journal Title: 
Cytometry B Clin Cytom
Original Publication Date: 
Jun 2017

BACKGROUND:

Nashville

Thank you for attending the 2017 Nashville Patient and Family Conference.

Event Date: 
Sat, 06/24/2017 -
7:30am to 1:30pm
Conference Event Type: 

A retrospective study of paroxysmal nocturnal hemoglobinuria in pediatric and adolescent patients

Author(s): 
Mercuri A, Farruggia P, Timeus F, Lombardi L, Onofrillo D, Putti MC, Pillon M, Cantarini ME, Corti P, Tridello G, De Bortoli M, Pegoraro A, Cesaro S
Primary Author: 
Mercuri A
Journal Title: 
Blood Cells Mol Dis
Original Publication Date: 
Mar 2017

Briana Donis

“I was having a pretty awesome year.  I was very well known at school and I had a boyfriend.”  She had just been accepted at the school of her choice when she noticed how really tired she was all the time. And then the bleeding started.

Ricky Smith, Jr.

"I just wanted to live the normal life of a teenager," said Ricky. But it just wasn’t meant to be. When he was taken to the hospital to find out why he’d become so weak, he passed out because he had so little blood in his body.