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Community and support

AAMDSIF Peer Support Network

Helps people affected by GVHD and other rare bone marrow failure diseases connect with each other. Supported by trained volunteers who are also patients, caregivers, or family members familiar with the challenges you may be going through. Connect one-on-one or with a local support group through the Community Connections program.

GVHD Support Groups via Zoom

Sponsored by the Blood & Marrow Transplant Information Network (BMTInfonet), these online support groups serve both patients with GVHD and their family caregivers. For information on upcoming group events, email help@bmtinfonet.org

AAMDSIF Patient HelpLine

Connects you with trained information specialists who can answer questions about issues related to bone marrow failure diseases, including GVHD, and provide emotional support, guidance, and referrals to national and local resources for financial assistance, support groups/peers, and more. Available via phone, email, or online chat.

Be the Match® Patient Support Center

Free one-on-one support from a patient navigator or social worker for patients, caregivers, and family members. Get help learning about the transplant process, coping with uncertainty, accessing financial grants, and connecting with others who’ve been through stem cell/bone marrow transplant.

Be The Match® Spiritual Support Services

Connect with a certified chaplain who can offer free, non-denominational support for handling serious illness, major life transitions, relationship concerns, and grief.

Bone Marrow & Cancer Foundation

Licensed therapists provide emotional support via telephone sessions for patients, family members, and caregivers. Ten 25-minute sessions are available at no cost.

Caring Connections

Matches patients and caregivers with other people who have been through stem cell/bone marrow transplant and can provide support. Sponsored by BMT InfoNet. Request a connection by completing a form online or speaking with a counselor.

Peer Connect Program

A program that matches patients and caregivers with trained volunteers who can provide emotional support, answer questions, and share their own experiences via phone calls or email. Sponsored by Be the Match.

Peer Support On Call Program

Free service run by a licensed staff social worker and offered by the National Bone Marrow Transplant Link, offering emotional support through one-on-one conversation with trained peer support volunteers who are stem cell/bone marrow transplant survivors, caregivers, and marrow donors. You can arrange to speak one-on-one with the social worker or request a call from a peer support volunteer.

Anthony Nolan Patients & Families Forum

An online discussion board where you can post and read about various issues related to bone marrow or stem cell transplant, including GVHD.

Graft-Versus-Host Disease (GVHD) Facebook Group

This private group, which you must submit a request to join, includes more than 3,000 members, including patients, family members, and caregivers. Active discussions to view or join about all things GVHD.

Bone Marrow & Cancer Foundation Patient Navigators

Staffed by social workers, this program helps people undergoing bone marrow/stem cell transplants to navigate the healthcare system and alleviate barriers. Navigators can guide patients, family members, and caregivers to resources such as financial options, housing opportunities, treatment centers, and medical specialists.

Directory of GVHD Specialists

A list of healthcare specialists with experience treating patients who have GVHD, including dermatologists, ophthalmologists, pulmonologists, oral medicine specialists and others. Providers in the directory accept patients for treatment, regardless of where they received their stem cell transplants. Produced by the Bone & Marrow Transplant Information Network.

Patient Advocate Foundation (PAF)

A charity program that provides direct services to patients who need help accessing care and treatment recommended by their doctor. The PAF can assist with insurance issues, payment problems, and eliminating other obstacles standing in the way of your healthcare.

Patient Services Incorporated

A program to provide support with co-pay, insurance premium, travel, and infusion costs for a range of chronic and rare diseases. You can also find free legal help for disability policy and health insurance issues.

BMT InfoNet Patient Assistance Fund

Offers small grants to help patients and caregivers with living expenses during first 12 months after stem cell transplant or during treatment with chronic GVHD within 12 to 24 months after transplant. Please email inquiries to help@bmtinfonet.org.

Community Action Partnership

National network of local Community Action Agencies (CAAs) that may provide assistance with energy costs, emergency food funding, and more. Site includes searchable Find Your CAA database to find an agency that may serve your area.

Vital Options International

This worldwide foundation supports qualified patients, caregivers, and families with assistance through the Selma Schimmel Vital Grant. The support program is available to qualified patients enduring a financial hardship due to a chronic, terminal, or rare disease.

American Transplant Foundation—Patient Assistance Program

Provides assistance for insurance issues, medication co-payments, and changes to your insurance provider. This program also offers emergency assistance grants and financial support to transplant recipients.

Bone Marrow & Cancer Foundation

Supports patients before and after transplant. Provides various types of financial assistance, including travel, treatment, and living expenses, Careline crowdfunding, and scholarship grants. Assistance is not limited by disease, type of transplant, or patient age.

If you’re a cancer survivor, these groups may also offer treatment-related financial support: Cancer Care®, Family Reach, Leukemia and Lymphoma Foundation®

ClinicalTrials.gov Database

The definitive source on privately and publicly funded clinical studies being conducted around the world. Searchable database of studies currently in progress.

Clinical Trial Support Center

The Leukemia & Lymphoma Society® offers Clinical Trial Specialists who can work one-on-one with patients and caregivers to personally assist them throughout the entire clinical trial process. Clinical Trial Specialists are registered nurses with expertise in blood cancers and the clinical trial process.

Jason Carter Clinical Trials Search & Support

Allows you to search available clinical trials, including trials that may be available for bone marrow transplants, stem cell transplants, or GVHD. Contact a clinical trial navigator for assistance and one-on-one support. Also offers financial assistance for travel related to clinical trials.

Blood & Marrow Transplant Information Network (BMTInfoNet) – Employment and Financial Health

Provides valuable information about work rights and options after transplant, including a video that goes more in-depth about how to exercise those rights.

Cancer and Careers

Provides information on working during and after cancer, workplace legal rights, insurance assistance, career counseling, and more.

Job Accommodation Network (JAN)

Helps post-transplant patients understand workplace accommodations they may be entitled to as they transition back into the work force. JAN is free and offers guidance on employment for those living with disabilities and medical conditions.

Air Care Alliance

Helps people who need transport for a variety of reasons, including medical travel. This group connects people with volunteer pilot organizations in their area.

Air Charity Network

Coordinates free air travel for people with distant doctor appointments, special surgeries, or other compelling medical reasons. Serves all 50 states, and its volunteer pilots use their own aircraft, fuel, and time to provide free air transportation to medical facilities for citizens who are financially distressed or otherwise unable to travel on public transportation.

LifeLine Pilots

Provides free transportation through volunteer pilots for financially distressed passengers with medical and humanitarian needs.

Mercy Medical Angels

An organization dedicated to helping patients who need to travel for care.

BMTInfonet Video Learning Library

A regularly updated library of videos, webinars, and conference presentations, featuring leading stem cell transplant experts who share timely and authoritative information about GVHD, managing life after stem cell transplant, the role of nutrition in long-term health, the latest research insights, and more. Some videos also feature GVHD patients and caregivers sharing their experiences and insights.

Graft Versus Host Disease: Living with the After Effects of Bone Marrow/Stem Cell Transplant

Popular and recently updated book with up-to-date resources and important current information to help patients and their families navigate the daunting yet life-saving bone marrow/stem cell journey and the role that GVHD plays. To order: visit www.nbmtlink.org/product/graft-versus-host-disease/

GVHD Fact Sheet Series

Series includes easy-to-read information for understanding GVHD in general and for managing chronic GVHD symptoms affecting specific areas, including the mouth, skin, eyes, and lungs. Published by Be the Match. Available in English and Spanish.

Living Now Magazine

Eight-part online magazine series to help you get the most out of life after stem cell transplant. Personal stories, tips, and resources. Published by Be The Match. Available in English and Spanish.

Marrow Masters Podcast Series

Living with Chronic GHVD (Season 1); Busting Myths About Stem Cell Transplants (Season 2); Patient Stories (Season 3); Caregiving for Stem Cell Transplant Patients (Season 4); and Survivorship Issues (Season 5).

nbmtLINK Webinar Library

A series of video- and audio-recorded presentations given by stem cell transplant medical experts, researchers, as well as patients and caregivers. Webinars explore a variety of issues related to GVHD from research insights, to dietary effects, to tips for managing the challenges of caregiving.

Reading Series for Stem-Cell Transplant Patients, Families, and Caregivers

This easy-to-read series is specifically created to take patients and families through the transplant process. Titles include: Graft-versus-Host Disease: What to Know, What to Do; Bone Marrow and Blood Stem Cell Transplants: A Guide for Patients and Their Loved Ones; and Eating Well, Living Well After Transplant. Many titles available in English and Spanish.

Virtual Monthly Lunch & Learn Sessions

Online presentations from research and medical experts as well as patients and caregivers, designed to address a wide array of important topics for transplant patients, family members, and caregivers, including GVHD. Attend live presentations virtually to listen and ask questions or view previously recorded Lunch & Learn programs. Sponsored by National Bone Marrow Transplant Link.

AAMDSIF March for Marrow Walks

These fundraising walks occur all over the United States and spread awareness about bone marrow failure. AAMDSIF can assist with organizing a walk, virtual walk, or fun run.

Celebrate Second Birthdays

Email info@nbmtlink.org to have a transplant patient’s name added to the Second Birthday program, offered by the National Bone Marrow Transplant Link each year, transplant patients celebrate the day they received the gift of life. Our (monthly) new card will brighten their day and remind them how special they are.

Celebrating a Second Chance at Life Symposium

Annual week-long conference for stem cell transplant survivors, healthcare professionals, caregivers, and family members. Features speakers and workshops designed to help families manage the many medical, psychosocial, and financial challenges that can arise after stem cell transplant.

GVHD National Symposium

Annual conference focusing on the latest research and insights on GVHD. Provides an opportunity for stem cell transplant survivors, their families, and caregivers to interact with leading experts on GVHD. Sponsored by the Meredith A. Cowden Foundation to raise awareness about GVHD, promote research to further understand its cause, and to review cutting edge approaches to prevention and treatment.

Anthony Nolan My Tracker App

This secure mobile app helps stem cell transplant recipients manage recovery after transplant. Lets you track various aspects of recovery such as blood counts, changes in your condition, health details, and progress toward your goals. You can also use the app to set appointment and medication reminders and connect with information on how a transplant can affect physical and emotional aspects of life.

CaringBridge Personalized Update Page

A free online tool that lets you set up a website for sharing updates and information about a health situation with family and friends who want to be in the know to support you. Lets you easily share news, photos, and/or requests for help and to receive support.

Lotsa Helping Hands Support Tool

An online organizational tool that lets you coordinate support for people who need assistance, such as people recovering from or managing illness. The site allows you to recruit volunteers and organize a plan for things like meal deliveries, transportation, and more.

Financial Planning Worksheet

A form developed by Be the Match to assist with budgeting and managing costs associated with a stem-cell transplant. Other financial assistance resources are also provided.

Transplant Center Database

Allows you to search for statistics and other details about transplant centers across North America. Search by disease, type of transplant, state/province, or type of patient (adult or pediatric).

Looking for a digital way to track your medicines?

Creating a list with pen and paper always works. But to keep things easily at your fingertips, consider a mobile app you can use on your smart phone or tablet. Many allow you to record the details of each medicine you take as well as to set up reminders for when it’s time to take or refill them.

The Google Play (for Android devices) and Apple (for iPhones) app stores have plenty to choose from. To help you choose:

  • Do an online search for best medicine tracker apps. You’ll find plenty of reviews from users, technology testers, and healthcare professionals.
  • Check the customer reviews and overall ratings of different trackers within the app stores.
  • Ask your care team for a recommendation.
  • Look for features that will help you most. Some let you set reminders for taking doses and alerts for when refills are due. Some tout extra ease of use or have versions for different languages. And while some charge a small fee, many are available for free.
  • Sample different ones to see what works best for you. A little time spent testing different options could help save you time and effort with staying on track with your medicines in the long run!

If you’re a cancer survivor, you can also find counseling services, support groups, financial assistance programs, and more through these organizations:

Image of a group of people sitting in a circle in a support group
Image of a group of people sitting in a circle in a support group

Our advocacy group partners

Image of man and a woman sitting together looking at a phone and a tablet Image of man and a woman sitting together looking at a phone and a tablet

Stay up to date on the latest GVHD resources

Sign up for occasional email updates, and get a personalized GVHD Medical Alert card you can share with new healthcare providers, pharmacists, and others who need to understand your health status.