Social Media – Transforming the Way We Communicate
Social media tools help you interact with the entire 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 community–patients, families, healthcare providers, and researchers–in significant ways. These online communication channels also help us reach patients who might not know about our programs and services.
Now is the time to get social!
Using social media, you can find information, opinions, and advice from AA&MDSIF, the research and healthcare communities, and other patients. Getting answers can be as simple as following and engaging us on Twitter, starting or joining a conversation with a question or comment on our Facebook page, and follow us on Instagram!
Other Social Media
Marrowforums: A free online forum where aplastic anemia aplastic anemia: (ay-PLASS-tik uh-NEE_mee-uh) A rare and serious condition in which the bone marrow fails to make enough blood cells - red blood cells, white blood cells, and platelets. The term aplastic is a Greek word meaning not to form. Anemia is a condition that happens when red blood cell count is low. Most… , MDS, and PNH patients, caregivers, and family members can find each other, make personal connections, and trade information and support.
PNH Support Forum: This online forum provides support by sharing the personal experiences of the members who have or care about someone with PNH. To join, email info@pnhfoundation.org for instructions.