Support Groups
AAMAC Provincial Support Groups
The Aplastic Anemia & Myelodysplasia Association of Canada volunteers with personal experience can provide support for those with MDS, aplastic anemia, and paroxysmal nocturnal hemoglobinuria. Their Medical and Scientific Advisory Committee made up of Canadian experts can refer patients to helpful resources though a network of organizations developed over more than 20 years. Contact them for information about telephone and e-mail peer-to-peer support, educational material, their quarterly newsletter, support group meetings, and educational conferences.
http://www.aamac.ca/treatmentsupport.htmlBlood & Marrow Transplant Information Network (BMT InfoNet): Patient-to-Survivor Form
The BMT InfoNet Patient-to-Survivor form, when filled out and submitted, can “link” a current patient with someone who has been through the experience. Patients include those who are candidates for a bone marrow, peripheral blood stem cell, or cord blood transplant. Survivors and their family members can share valuable information and provide emotional support.
http://www.bmtinfonet.org/patient.htmlDaily Strength: Myelodysplasia Support Group
This Web site is a discussion board of information exchange between patients, survivors, and family members. There are posts by doctors, too. Members can find people that share the same challenges, learn what others are doing to cope with these conditions, give support to other members, and share as little personal information as desired.
http://dailystrength.org/c/Myelodysplasia/support-groupMarrowforums
Aside from the medical care that is required for the treatment of bone marrow failure diseases, there are many daily concerns that patients and their families face. Beyond the walls of a hospital, they can learn a great deal from other patients to help them cope with illness and be well-informed participants in their own care. The personal discussions at Marrowforums facilitate this person-to-person support. Participants must complete a free registration in order to access the forums.
http://www.marrowforums.org/MDJunction: People Helping People
This online discussion forum is a community of patients, family members, and friends dedicated to dealing with myelodysplasia, together. Individuals can read posts, ask questions, view diaries, and participate in online group activities such as giving another member an online “hug”.
http://www.mdjunction.com/myelodysplasiaMDS UK Patient Support Group
This online discussion forum is open to patients, family, care givers, health care professionals, and anyone affected by MDS. The forum is a patient-led tool that is intended as a platform for the exchange of support and information. The free registration is simple and required to add, but not view, posts.
http://www.mdspatientforum.org.ukPatient UK: Myelodysplastic Syndromes
On this forum, patients and their families post about their experiences and questions concerning myelodysplasia. The site also provides links to U.K.-based MDS support groups.
http://experience.patient.co.uk/discussion_list.php?d=974Click here to recommend a link.