Resources for Connecting with Other Parents
The Support Connection consists of a national network of volunteers, including patients, caregivers, and family members, willing to listen and offer comfort and support. The Support Connection can put you in touch with other parents who are dealing with issues similar to your own. In addition, volunteers may share personal experiences, coping strategies, problem solving skills, and informational resources. Peer support sessions take place over the phone.
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.
PNH support group is a discussion forum for PNH patients 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.
Resources on Bone Marrow Transplantation
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.
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 lifesaving 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.
Support Offered: Financial, Educational, and 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 Be The Match)
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 Be The Match 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.
Super Sam versus the Marrow Monsters A Guide to Bone Marrow Transplant for Children and Their Families (from the National Bone Marrow Donor Program “Be the Match”)
A 20-minute, animated film features Sam, a young boy making an epic movie production about his own transplant experience. Along the way, Super Sam meets many everyday heroes (patients, siblings, and health care staff) who talk about the hospital, their feelings, what transplant is, and what recovery is like.
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.
Partnership for Parents is a safety net for parents of children with serious illnesses.
Pediatric Myelodysplastic Syndrome and Bone Marrow Failure Registry at Children’s Hospital Boston
The Pediatric MDS and BMF Registry is an NIH-supported collaborative research effort that includes centers across the country.
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.
The Social Security Administration Compassionate Allowances Initiative
Compassionate Allowances (CAL) are a way of quickly identifying diseases and other medical conditions that invariably qualify under the Listing of Impairments based on minimal objective medical information. In 2012, Aplastic Anemia was been added to this list. Compassionate Allowances allow Social Security to target the most obviously disabled individuals for allowances based on objective medical information. Compassionate Allowances is not a separate program from the Social Security Disability Insurance or Supplemental Security Income programs.