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Evaluation of the Quality of Life and Treatment Experiences of Patients with Paroxysmal Nocturnal Hemoglobinuria

The purpose of the study is to learn what it is like to have PNH and being treated with for PNH. Individuals who participate in the study will complete an online survey about what it is like to live with PNH. The survey will take about 45 minutes. Participants may also be asked to take part in a one-hour interview by telephone or computer. The interviewer will ask questions about what it is like to have, and be treated for, PNH. No medical treatment of any kind will be given as part of this study.

2023 AAMDSIF Patient and Family Conference in Dallas, TX

Join patients, families and caregivers for the 2023 Dallas, TX Patient and Family Conference This event is chaired and organized by Dr. Taha Bat from UT Southwestern.

Event Date: 
Sat, 11/04/2023 - 9:30am (EDT)
2023 Patient and Family Conference - Dallas, Texas »
Bone Marrow Disease(s): 
Conference Event Type: 
Patient and Family - Regional One Day

2023 Omaha Patient and Family Hybrid Conference

Here are the session recordings and the presentations for the 2023 Omaha Patient and Family Hybrid Conference.

Event Date: 
Sat, 04/15/2023 - 9:30am (EDT)
Conference Materials: 
File High-Risk MDS and Non-Transplant Therapies
File PNH Non-Transplant Therapies
File Managing PNH and Complications
File Survivorship: Life after Diagnosis
File Transplant
Bone Marrow Disease(s): 
Conference Event Type: 
Patient and Family - Regional One Day