You are not alone!
Because 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… diseases are so rare, it is often difficult to get in touch with others who are dealing with issues similar to your own. We can help by putting you in touch with other patients and families also battling these diseases.
The Peer Support Network consists of a national network of volunteers, including patients, caregivers and family members, willing to listen and offer comfort and support. In addition, volunteers may share personal experiences, coping strategies, problem solving skills and informational resources. Support sessions take place over the phone.
Volunteers receive special training provided by AAMDSIF. They are also required to sign an agreement stating that they will keep all caller information private and confidential.
Our volunteers know the importance of networking with other patients, spouses, family members and loved ones. Speaking with a Support Connection volunteer is a great way to gather information and receive emotional support.
To talk to a volunteer:
Call (800) 747-2820, select option 1, or email help@aamds.org, and we will match you with a Support Connection volunteer who can best meet your needs.
Become a volunteer:
Visit the Volunteer Center to learn more.