Resources for Parents

Resources for Connecting with Other Parents

AA&MDSIF Peer Support Network

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. Peer support sessions take place over the phone.

Marrowforums

Marrowforums is a discussion forum for patients with bone marrow failure diseases such as aplastic anemia, MDS, and PNH, and for the people who care about them: their family members and the friends and caregivers who make up their extended family and support system. Professionals who work with these diseases are also welcome.

Resources on Bone Marrow Transplantation

BMT InfoNet

Support Offered: Educational, Emotional

This site is dedicated exclusively to serving the needs of persons facing a bone marrow, blood stem cell or umbilical cord blood transplant. In addition to high quality medical information in easy-to-understand language, BMT InfoNet offers patients and survivors emotional support. A volunteer network of over 200 transplant survivors is available to help newly diagnosed patients and their loved ones cope with the stress of a life-threatening diagnosis, and the prospect of a bone marrow, stem cell, or cord blood transplant.
BMTsupport.org

Support Offered: Educational, Emotional

BMTSupport.org is an interactive non-profit organization which seeks to motivate, empower, and enlighten people with an interest in bone marrow transplantation through peer support, education and awareness of this difficult but potentially life saving procedure. Their mission is to uphold those who suffer the effects of illness before, during and after transplant, to celebrate the miracles that bone marrow transplantation has given in the lives of those who are now well, and to offer encouragement and caring honesty to individuals and families facing marrow transplantation.

Bone Marrow Foundation

Support Offered: Financial, Educational, Emotional

The mission of The Bone Marrow Foundation is to improve the quality of life for bone marrow and stem cell transplant patients and their families by providing financial aid, education, and emotional support.

National Bone Marrow Transplant Link

nbmtLink is a non-profit organization specifically serving stem cell transplant patients, their caregivers, families, and health professionals. The mission of nbmtLink is to help patients, as well as their caregivers, families, and the health care community to meet the many challenges of stem cell transplant by providing vital information and support services.

National Marrow Donor Program (also known as the Marrow Foundation)

The National Marrow Donor Program helps people who need a life-saving marrow or blood cell transplant.  They connect patients, doctors, donors, and researchers to resources they need to help more people live longer, healthier lives. To achieve their mission, they search the National Bone Marrow Registry -- the largest listing of volunteer donors and cord blood units in the world, support patients and their doctors throughout the transplant process, and match patients with the best donor or cord blood unit using innovative science and technology.

Other Resources for Parents

American Academy of Pediatrics

This site provides general information on promoting health and well being for children. You can also search for articles on specific bone marrow failure diseases.

National Heart, Lung, and Blood Institute

The National Heart, Lung, and Blood Institute provides global leadership for a research, training, and education program to promote the prevention and treatment of heart, lung, and blood diseases and enhance the health of all individuals so that they can live longer and more fulfilling lives. This site provides reliable information on bone marrow failure diseases and their treatment.

National Library of Medicine

This is the world's largest medical library. Their Web site provides comprehensive information on various bone marrow failure diseases.

National Institutes of Health

The National Institutes of Health (NIH) is the nation's leading medical research agency. They provide important medical discoveries that improve people's health and save lives. NIH scientists investigate ways to prevent disease, as well as discover the causes, treatments, and even cures for common and rare diseases. On this site you, can search for aplastic anemia, MDS or PNH and review current research.

girlshealth.gov

This site is sponsored by the National Women's Health Information Center of the U.S. Department of Health and Human Services. It is written by and for young women in their teens. A section under "Illness and Disability" addresses many questions and concerns expressed in this age group about hospital life, school, friends, family, and dating.

Learning Disabilities Association of America

(412) 341-1515
LDA provides support to people with learning disabilities, their parents, teachers, and other professionals. An online course is available for parents describing how to get the services your child needs under the Individuals with Disabilities Education Act.

For additional resources, visit the Patient Resources page.