2018 transplant recipient
Offers one-on-one sessions with a trained professional, topic-based phone support groups, and a Peer Connect program than can arrange phone calls with a trained volunteer who’s “been there” with caring for someone after stem cell transplant.
Offers individual and support group counseling by a staff of professional oncology social workers. Counseling available in English or Spanish.
Matches patients and caregivers with others who’ve been through stem cell/bone marrow transplant and can provide support. Sponsored by BMT InfoNet.
National organization dedicated to supporting and advocating for caregivers’ quality of life. Offers an online discussion forum, helpful advice, and can connect caregivers to support and resources in their areas.
Peer Support on Call (Phone: 800-546-5268)
Free service from the National Bone Marrow Transplant Link offering one-on-one phone support with trained peer support volunteers for caregivers and others after transplant.
An online support group for patients and caregivers dealing with GVHD. Members share help, advice, and information about their experiences with the disease and treatments.
Connects you with others caring for chronically ill spouses or life partners. Find local in-person support groups as well as phone support, online discussion forums, peer mentors, respite weekends, and more.
This Caregiver’s Companion series provides useful tips and advice on dealing with the stress and details of managing someone’s care long-term (specific chapters can be downloaded from the site, in English and Spanish). Upon enrollment, the caregiver receives the Companion Toolkit and may take advantage of personalized coaching sessions to provide individualized support.
Bone Marrow Transplant Information Network
A health psychologist shares advice on ways to cope and build resilience as a caregiver for someone affected by GVHD.
National Bone Marrow Transplant Link
Free monthly call-in event and library of recorded podcasts featuring stem cell transplant patients, caregivers, and experts in the field sharing practical advice and insights on a wide variety of transplant-related topics.
Season 4: Caregiver Perspective on the Bone Marrow/Stem Cell Journey
An 8-episode series featuring caregivers’ stories and insights. The site features a wide array of podcasts and webinars on issues related to the transplant journey and GVHD.
A multi-part Emmy-awared winning film series, focusing on the stories of various stem cell/bone marrow transplant survivors and their caregivers, some discussing their experiences with GVHD. Produced by National Bone Marrow Transplant Link.
Information, support, and tips for people caring for loved ones with a wide array of health challenges. Includes a searchable database of local caregiver resources and support groups.
FOR RALLYING HELP AND SUPPORT
Lets you create a personal webpage for sharing health updates and rallying support from friends and family.
Lets you organize volunteers by creating a personalized calendar for specific needs like meal preparation, chores, and more.
FOR STAYING ORGANIZED
Includes a downloadable guide and worksheets for staying organized as a caregiver for blood cancer patients and others. From the Leukemia & Lymphoma Society.
Free mobile app for organizing and tracking medicines and health information.
Free online and mobile app for tracking medicines.
Online service to learn about and locate local respite care services, which provide planned or emergency care for adults or children and temporary relief for caregivers.
Offers a searchable Services by State database that lets caregivers find respite care, resources, and other information and services available in their area. Also includes a robust list of classes, webinars, and support groups in English and Spanish.
This book, published by the National Bone Marrow Transplant Link, includes personal stories and advice from people who’ve cared for spouses, children, and other loved ones who’ve undergone stem cell transplant.
The Aplastic Anemia and MDS International Foundation offers this online collection of personal stories from patients, parents, spouses, and other family who are living with these and related illnesses, such as GVHD.
Book of inspirational personal stories, poems, and practical advice for stem-cell transplant survivors, patients, and families. Published by the National Bone Marrow Transplant Link.
Incyte Corporation is not affiliated with these organizations but may have provided funding for some of their educational programs. This is not a complete list of organizations within the GVHD community and should not be considered an endorsement by Incyte of any particular organization listed.
Click to see what steps you can take along the way to help with GVHD.