Join us in endorsing the recent appeal to Congress with the following actions. Your voice is important to continue these services for patients and provide opportunities for researchers to find the cures.
Read the letter to Congress from Research!America, with AAMDSIF and 600 other organizations, here.
AAMDSIF is pleased to announce that we will host a support group for patients diagnosed with PNH. The group is hosted by AAMDSIF and will be monitored to ensure the privacy and safety of our participants.
Here are links to the conference sessions from the 2025 Kansas City Patient and Family Conference:
The 2025 Patient and Family Conference in Rockville, MD was held on March 8, 2025.
Below are links to conference session recordings in full.
AAMDSIF is pleased to announce that we will host a support group for patients diagnosed with PNH. The group is hosted by AAMDSIF and will be monitored to ensure the privacy and safety of our participants.
This study describes the health-related quality of life (HRQoL) and symptom-specific functional impairment of patients with paroxysmal nocturnal hemoglobinuria