Now comes the business of seamlessly incorporating the components of the PNHF so that we create a unified organization that fits the needs of all of our patients.
Our number-one priority has always been to effectively and efficiently present our organization as the resource hub for all bone marrow failure bone marrow failure: A condition that occurs when the bone marrow stops making enough healthy blood cells. The most common of these rare diseases are aplastic anemia, myelodysplastic syndromes (MDS) and paroxysmal nocturnal hemoglobinuria (PNH). Bone marrow failure can be acquired (begin any time in life) or can be… disease patients, families and health professionals. To that end, we’ve been talking with branding experts about renaming AAMDSIF to better reflect our diseases, as well as our mission and vision.
This is no small thing, but it is a work in progress. It will take several months of research and analysis – including input from all of our stakeholders – before we have a sense of the best direction to take. We expect to have a decision one way or the other by the end of summer.
Noted here are direct links to PNH-specific information:
- See a PNH Specialist
- PNH Disease Information
- Online Education
- Support
- Walk for PNH information will be posted as soon as it is available - the Walk will be in September 2017.
And we are here to answer your questions. Please contact our Patient Educator by phone (800) 747-2820 x140 or by email.