Resources to Help

AAMDSIF has compiled a broad range of helpful resources to assist caregivers as they support the bone marrow failure patients in their lives.

Resources for All

AAMDSIF Support Connection

The Peer Support Connection consists of a national network of volunteers, including patients, caregivers and family members willing to listen and offer comfort and support. The Peer 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.

The Caregiver Action Network

The Caregiver Action Network is a family caregiver organization working to improve the quality of life for over 65 million Americans who care for loved ones with chronic conditions, disabilities, disease or the frailties of old age. CAN (formerly the National Family Caregivers Association) provides education, peer support and resources to family caregivers across the country free of charge.

Lotsa Helping Hands

Lotsa Helping Hands connects people through the power of community — whether you need help or you want to provide help. You may be caring for a loved one who's sick, an aging parent, a child with special needs or a veteran. When people rally to help someone in their family or community, Lotsa Helping Hands makes it easier for each person to know what to do and when.

Marrowforums

Marrowforums is an online discussion group for patients, family, caregivers and friends dealing with bone marrow failure diseases. Extended family and professionals who work with these diseases are also welcome.

MPN Advocacy & Education International

MPN Advocacy & Education International provides resources, quality education programs, advocacy support and services to patients with myelofibrosis, essential thrombocythemia and polycythemia vera, caregivers, physicians and all those in the MPN community.  It is committed to assisting, directing and informing its constituents on pertinent issues that impact quality care, treatment accessibility, updates on current research and updates on clinical trials. Learn more about patient conference for those dealign with MPNs at www.mpnadvocacy.com/events/

The North American Pediatric Aplastic Anemia Consortium

The North American Pediatric Aplastic Anemia Consortium (NAPAAC) is a collaborative research effort that seeks to develop better therapies for children with aplastic anemia by combining the expertise and resources of the leading pediatric hematologists in North America.

National Heart, Lung, and Blood Institute

The National Heart, Lung and Blood Institute provides global leadership for research, training, and education programs to promote the prevention and treatment of heart, lung and blood diseases. The site provides reliable information on bone marrow failure diseases and their treatment.

National Institutes of Health

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

National Library of Medicine

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

PNH Support Group

The PNH Support Group is a discussion forum for PNH patients and for the people who care about them, including family members and the friends and caregivers who make up their extended family and support system.

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 added to this list. Compassionate Allowances lets Social Security 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.

Resources for Communicating

Caring Bridge

Caring Bridge provides an online space where you can connect, share and receive support – a personalized "caring" social network, available 24/7 to everyone at no cost. Protected sites make it easy to post health updates during any type of health event. Family and friends visit the site to stay informed and leave supportive messages.

CarePages

CarePages is an online community where visitors come together to share the challenges, hopes and triumphs of people facing a life-changing health event. Their mission is to ensure that no one faces a health challenge alone.  Through personalized websites, members can relate their stories, post photos and update friends and family instantly. In turn, people who care can send messages of love and encouragement. CarePages also offers a variety of resources and support tools for living a more compassionate life.

Resources for the Care of Aging Patients

The National Council for Aging Care mission is to develop a comprehensive, coordinated and cost-effective system of home and community-based services that helps elderly individuals maintain their health and independence in their homes and communities.

Caregiver Resources in the Ask Medicare Toolkit are designed to help caregivers address challenging issues and work effectively with Medicare to ensure their family members and friends receive the best possible care.

Resources for the Care of Pediatric Patients

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.

The Bone Marrow Garden

With the help of Dr. David Margolis, Program Director of Children’s Hospital of Wisconsin’s Blood and Bone Marrow Transplant Program, AAMDSIF presents an explanation of bone marrow failure, the treatments, side effects and activity restrictions in The Bone Marrow Garden, a video and slide presentation created especially for children and adolescents.

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

LDAA 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. (412) 341-1515

Issues for Parents of Pediatric Bone Marrow Failure Patients

Listen to Dr. Kenneth Cooke, Director of the Johns Hopkins pediatric bone marrow transplant program help kids understand bone marrow failure syndromes in the video.

Helping Young Bone Marrow Failure Patients with Making a Successful Transition 

This webinar is developed to help young adults with bone marrow failure and their families be better prepared for adulthood, especially the move from pediatric to adult-oriented health care. Drs. Monica Bessler and Kim Overby discuss key issues for patients in this age group and share strategies for how to make the successful transition from pediatric to adult care.

MDS in Children: What Parents Need to Know

Watch Dr. Inga Hoffman, MD, PhD, of Boston Children’s Hospital discuss issues regarding MDS in Children.

Partnership for Parents

Partnership for Parents is a safety net for parents of children with serious illnesses.

Pediatric Myelodysplastic Syndrome and Bone Marrow Failure Registry

The Pediatric MDS and BMF Registry is an NIH-supported collaborative research effort that includes centers across the country, including the Children’s Hospital in Boston.

Transitions— Changing Roles for Families

This check-list identifies key tasks that young adults should be able to do as they make the transition out of pediatric healthcare and how families should prepare for it. Is your family ready to support this transition? Checklists are in English and Spanish.

Transitions - Changing Roles for Adolescent Youth

This check-list identifies key tasks that young adults should be able to do as they make the transition out of pediatric healthcare. Is your child ready to transition? Checklists are in English and Spanish.

Resources for Care of Veteran Patients

The Department of Veterans Affairs

The Department of Veterans Affairs (VA) offers a number of resources for caregivers and veterans, including VA's Caregiver Support Line: (855)-260-3274. In addition, the VA has created a Caregiver Tool Box to help you find tools that work for your veteran.

Resources on Bone Marrow Transplantation

BMT InfoNet

This site is dedicated exclusively to serving the needs of patients 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

BMTSupport.org is an interactive non-profit organization designed 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 support those who suffer the effects of illness before, during and after transplant, to celebrate the miracles that bone marrow transplantation has given to those who are now well, and to offer encouragement those facing marrow transplantation.

Bone Marrow Foundation

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 and families, as well as health professionals. The mission of nbmtLink is to help the patient community and the health care community 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 the resources they need to help more people live longer, healthier lives. To achieve this mission, they search the "Be The Match" National Bone Marrow Registry - the largest database of volunteer donors and cord blood units in the world. They 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

A 20-minute animated film from the National Bone Marrow Donor Program (“Be the Match”) 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 a transplant means and what recovery is like.

Super Sam versus the Marrow Monsters: Activity Sheets and Word Search Puzzle

Companion activity sheets and a word puzzle for kids to complete after seeing the Super Sam film.