Resource Directory

BMT InfoNet has created a directory of organizations that provide helpful information and support for transplant patients and their loved ones. Click on the topic below that interests you to see organizations that can help you. Click on the name of the organization to access their web site. 

To order a print version of this directory click here.

Preparing for Transplant

Blood & Marrow Transplant Information Network (BMTInfoNet)

(888) 597-7674

American Society for Blood and Marrow Transplantation

(847) 427-0224

Be The Match

(888) 999-6743

Center for International Blood and Marrow Transplant Research

(414) 805-0700

U.S. Dept. of Health & Human Services

Clinical Trials

About Clinical Trials (ACT)

(877) 970-7848
  • Videos explaining why to participate in a clinical trial
  • Factors to keep in mind when choosing a trial
  • The informed consent process
  • How to find the appropriate clinical trial

Chronic Graft-versus-Host Disease Consortium

  • A collaborative effort among healthcare professionals and patient advocates to understand and effectively treat graft-versus-host disease (GVHD)
  • Links to clinical trials studying treatment options for GVHD

Emerging Med Clinical Trial Navigation Serviced

(877) 601-8601

Free personalized search assistance for clinical trials.

Jason Carter Clinical Trials Program

(888) 814-8610
  • Help you and your family learn about and access clinical trials.
  • One-on-one telephone support from a clinical trial nurse to help navigate and search for clinical trials.
  • Easy-to-use, web-based search tool to find relevant clinical trials
  • Easy-to-understand educational resources for patients and families to learn about cancer treatment options and clinical trials.
  • Financial assistance for travel expenses related to clinical trials

National Heart, Lung and Blood Institute

(301) 592-8573

Free stem cell transplants for patients who qualify for one of the agency’s clinical trials.

National Institutes of Health

Information about clinical trials to treat a variety of diseases at medical facilities world-wide.  

National Institutes of Health Center for Cancer Research

(301) 435-5942

Free stem cell transplants for patients who qualify for one of the agency's clinical trials.

Bone Marrow, Stem Cell and Cord Blood Donors

Blood & Marrow Transplant Information Network (BMTInfoNet)

(888) 597-7674

American Society for Blood and Marrow Transplantation

(847) 427-0224

Be The Match

(888) 999-6743

Cord Blood Association

Information about donating cord blood for public use or storing it for private use.

DKMS/We Delete Blood Cancer

(866) 340-3567

Information for people age 18-55 on becoming an unrelated donor.

Kashi Clinical Laboratories

(877) 565-3287

Private testing for people who want to donate marrow or stem cells to a specific individual. Fee for service.

Parent's Guide to Cord Blood Foundation

Information about storing cord blood for private or public use. Data on cord blood registries.

Family Caregivers

Blood & Marrow Transplant Information Network (BMTInfoNet)

(888) 597-7674

Be The Match

(888) 999-6743

Cancer Support Community

(888) 793-9355

Information about caring for cancer patients and links to in-person support groups.

CareZone.com

Online and mobile app to organize medications, appointments, important contacts and other medical information. 

CaringBridge

Website where patients can create a personalized webpage to communicate with friends and family, and organize support during treatment. 

Lotsa Helping Hands

Organize volunteers by creating a personalized calendar and outlining your specific needs. 

My Med Schedule

(800) 543-2230

Online and mobile app to track a patient’s medication schedule.

Peer Support and Counseling

Blood & Marrow Transplant Information Network (BMTInfoNet)

(888) 597-7674

American Psychosocial Oncology Society Help Line

(866) 276-7443

Helpline that connects people with cancer and their caregivers with psychiatrists, psychologists, nurses, social workers, and counselors in their community who are skilled in the management of cancer-related distress.

 

Association of Cancer Online Resources

  • Electronic mailing lists for people coping with various types of cancer. 
    • Includes a group called BMT-Talk
    • Includes a group for those coping with graft-versus-host disease (GVHD).  
  • Select Mailing Lists from the main page of their website to join

CancerCare

(800) 813-4673
  • Financial aid for cancer patients

Smart Patients

Online support community for patients with amyloidosis, leukemia, lymphoma, multiple myeloma, POEMS syndrome and stem cell transplant patients.

Financial Assistance

Blood & Marrow Transplant Information Network (BMTInfoNet)

(888) 597-7674

Air Charity Network

(877) 621-7177

Free air transportation for patients in financial need who must travel to receive medical treatment.

Alex's Lemonade Stand

(866) 333-1213

Travel funds for children treated at specific hospitals.

American Cancer Society

(800) 227-2345
  • Road to Recovery program provides free rides for cancer patients to and from treatment.
  • The Hope Lodges offers free lodging for cancer patients undergoing treatment away from home. 

 

Andre Sobel River of Life Foundation

(310) 276-7111
  • Financial assistance for single parent families to help them remain by their child's bedside during a catastrophic illness
  • Application must be made through the child's social worker.

Be The Match

(888) 999-6743

Bone Marrow Foundation

(800) 365-1336

Financial aid for donor costs, medications and equipment, home and child care services, housing and transportation.

CancerCare

(800) 813-4673
  • Financial aid for cancer patients

Children's Organ Transplant Association (COTA)

(800) 366-2682

Fundraising help for a child who needs a transplant.

Good Days from CDF

(972) 608-7141

Help with drug co-payments, travel and lodging for patients with specific diseases.

Healthcare Hospitality Network

(800) 542-9730

Referrals to free or low cost lodging near medical facilities.

HelpHOPELive

(800) 642-8399

Fundraising help for patients with a catastrophic illness.

Joe's House

(877) 563-7468

Directory of lodging near medical centers that provide discount rates to cancer patients.

Leukemia and Lymphoma Society

(800) 955-4572
  • Information on leukemia, lymphoma, hodgkin disease, multiple myeloma, myelodysplastic syndrome (MDS) or a myeloproliferative disorder. 
  • Financial Assistance
  • Brochure for children about transplant
  • How to discuss a cancer diagnosis with a child, Trish Greene Back to School Program to prepare classmates for a child's return, and resources for teens and young adults.

Lymphoma Research Foundation

(800) 500-9976
  • Information and emotional support to persons with Hodgkin disease or non-Hodgkin lymphoma 
  • Financial assistance for patients undergoing treatment

National Foundation for Transplants

(800) 489-3863

Fundraising assistance for transplant patients.

National Heart, Lung and Blood Institute

(301) 592-8573

Free stem cell transplants for patients who qualify for one of the agency’s clinical trials.

National Institutes of Health Center for Cancer Research

(301) 435-5942

Free stem cell transplants for patients who qualify for one of the agency's clinical trials.

National Organization for Rare Disorders (NORD)

(800) 999-6673
  • Support and information for those affected by rare diseases.  
  • Links to support networks and financial aid for various medical conditions.

National Patient Travel Center

(800) 296-1217

Referrals to free or low cost transportation for families needing medical care away from home.

Partnership for Prescription Assistance

Links to companies that provide drugs free or at a discount to qualified patients.

Patient Access Network Foundation

(202) 347-9272

Help with co-pays for medicines used to treat specific diseases. Patient must have insurance and meet income guidelines.

Patient Advocate Co-Pay Program

(757) 952-0118

Financial assistance to qualified patients to help with prescription drug co-pays.

Patient Services Incorporated (PSI)

(800) 366-7741
  • Helps those with chronic illnesses or conditions subsidize cost of health insurance premiums.
  • Financial assistance available to patients with specific diseases. Covered diseases change periodically.

The National Children's Cancer Society

(800) 532-6459
  • Information for parents of pediatric cancer patients.  
  • Financial assistance for travel, meals and lodging while a child is receiving medical care.  
  • Survivorship information for parents of pediatric cancer patients.
  • Scholarships for pediatric cancer survivors.

TheSAMFund

(617) 938-3484

Grants for young adult survivors of cancer who are struggling financially.

United Healthcare Children's Foundation

(855) 698-4223

Help with medical expenses not covered by insurance for patients up to age 16 who have commercial health insurance.

United Way 211

List of agencies that provide housing, utilities and other financial support.

Medical Issues after Transplant

Blood & Marrow Transplant Information Network (BMTInfoNet)

(888) 597-7674

American Society for Blood and Marrow Transplantation

(847) 427-0224

Be The Match

(888) 999-6743

Children's Oncology Group Long-Tern Follow-Up Guidelines

A comprehensive guide on the late effects of pediatric cancer treatment, and recommendations for how to manage them.

National Bone Marrow Transplant Link (NBMTLink)

(800) 546-5268
  • Booklet about survivorship after transplant
  • Booklet about chronic GVHD

Graft-Versus-Host Disease

Blood & Marrow Transplant Information Network (BMTInfoNet)

(888) 597-7674

Be The Match

(888) 999-6743

BostonSight

(781) 726-7337

Information about PROSE lenses for patients with severe ocular GVHD.

Chronic Graft-versus-Host Disease Consortium

  • A collaborative effort among healthcare professionals and patient advocates to understand and effectively treat graft-versus-host disease (GVHD)
  • Links to clinical trials studying treatment options for GVHD

National Bone Marrow Transplant Link (NBMTLink)

(800) 546-5268
  • Booklet about survivorship after transplant
  • Booklet about chronic GVHD

National Cancer Institute Graft-versus-Host Disease (GVHD) Study

(301) 594-9336
  • Clinical trial researching health outcomes in patients with chronic graft-versus-host disease 
  • Free, comprehensive medical evaluation by by a team of GVHD experts with recommendations on appropriate care to manage a patient's GVHD symptoms

Help with Insurance

Foundation for Health Coverage Education

Personalized information about public and private health insurance options.

HealthCare.gov

(800) 318-2596

Federal website about current health insurance options.

Patient Advocate Foundation

(800) 532-5274

Assists patients who are having difficulty with health insurance coverage and reimbursement issues.

Triage Cancer

(424) 258-4628

Information about for transplant patients about:

  • Health insurance options and reimbursement issues
  • Family and Medical Leave Act
  • Americans with Disabilities Act
  • Disability insurance

Your Benefits Advocate

(312) 860-7417

Assistance by experienced attorney to get health insurance claims paid.  Fee for service.

Employment Issues

Blood & Marrow Transplant Information Network (BMTInfoNet)

(888) 597-7674

Cancer and Careers

(646) 929-8032

Tips on

  • Sharing a cancer diagnosis with employers
  • How to fix a resume gap
  • Your rights to accommodation in the workplace
  • Employment search strategies after treatment

Triage Cancer

(424) 258-4628

Information about for transplant patients about:

  • Health insurance options and reimbursement issues
  • Family and Medical Leave Act
  • Americans with Disabilities Act
  • Disability insurance

Complementary/Integrative Medicine

Memorial Sloan Kettering Cancer Center

Information on herbs, botanicals and other products, and their safety for cancer patients.

National Center for Complementary and Integrative Medicine

Research-based information on complementary and integrative medicine.

Young Adult Resources

Children's Oncology Group Long-Tern Follow-Up Guidelines

A comprehensive guide on the late effects of pediatric cancer treatment, and recommendations for how to manage them.

LIVESTRONG Fertility

(855) 220-7777

Information about parenting options after cancer treatment. 

Oncofertility Consortium

(312) 503-3378

Counseling on fertility preservation and options for having children after cancer treatment.

Stupid Cancer

(877) 735-4673

Radio show, online communities and links to support programs for young adult cancer survivors.

The Ulman Fund for Young Adults

(410) 964-0202
  • Educational scholarship for people who went through cancer treatment at age 15-39, or who were that age when a parent or sibling went through cancer treatment
  • List of other organizations that provide educational scholarships to young adults whose life has been touched by cancer

TheSAMFund

(617) 938-3484

Grants for young adult survivors of cancer who are struggling financially.

Pediatric Resources

Alex's Lemonade Stand

(866) 333-1213

Travel funds for children treated at specific hospitals.

American Childhood Cancer Organization

(855) 858-2226

Information about pediatric cancers, treatment options, and long-term complications. Resources for parents, children, and teens.

Children's Oncology Group Long-Tern Follow-Up Guidelines

A comprehensive guide on the late effects of pediatric cancer treatment, and recommendations for how to manage them.

Cure Search

(800) 458-6223

Information about pediatric cancer and treatment.

Leukemia and Lymphoma Society

(800) 955-4572
  • Information on leukemia, lymphoma, hodgkin disease, multiple myeloma, myelodysplastic syndrome (MDS) or a myeloproliferative disorder. 
  • Financial Assistance
  • Brochure for children about transplant
  • How to discuss a cancer diagnosis with a child, Trish Greene Back to School Program to prepare classmates for a child's return, and resources for teens and young adults.

The National Children's Cancer Society

(800) 532-6459
  • Information for parents of pediatric cancer patients.  
  • Financial assistance for travel, meals and lodging while a child is receiving medical care.  
  • Survivorship information for parents of pediatric cancer patients.
  • Scholarships for pediatric cancer survivors.

Disease Information and Support

American Brain Tumor Association

(800) 866-2282

Publications

American Sickle Cell Anemia Association

(216) 229-8600

Print material about sickle cell disease and links to support groups throughout the U.S.

Amyloidosis Foundation

(877) 269-5643

Information about amyloidosis and treatment options.

Amyloidosis Support Groups

(866) 404-7539

Information about amyloidosis and links to support groups.

Aplastic Anemia & MDS International Foundation Inc.

(800) 747-2820

Information and peer support for patients with aplastic anemia, myelodysplasia, and PNH.

Cutaneous Lymphoma Foundation

(248) 644-9014

Information about cutaneous lymphoma and links to online support groups.

Fanconi Anemia Research Fund

(541) 687-4658

Information and links to support services for patients with Fanconi Anemia.

Immune Deficiency Foundation

(800) 296-4433

Information on immune deficiency diseases, finding a specialist, clinical trials, and peer support.

International Myeloma Foundation

(800) 452-2873

Publications, conferences and links to support groups.

International Waldenstrom's Macroglobulinemia Foundation

(941) 927-4963

Information about Waldenstrom’s Macroglobulinemia, treatment options, and support groups.

Leukemia and Lymphoma Society

(800) 955-4572
  • Information on leukemia, lymphoma, hodgkin disease, multiple myeloma, myelodysplastic syndrome (MDS) or a myeloproliferative disorder. 
  • Financial Assistance
  • Brochure for children about transplant
  • How to discuss a cancer diagnosis with a child, Trish Greene Back to School Program to prepare classmates for a child's return, and resources for teens and young adults.

Lymphoma Research Foundation

(800) 500-9976
  • Information and emotional support to persons with Hodgkin disease or non-Hodgkin lymphoma 
  • Financial assistance for patients undergoing treatment

MPN Advocacy & Education International

(517) 899-6889

Information about:

  • Myelofibrosis
  • Polycythemia vera
  • Essential thrombocythemia

and links to support groups.

MPN Education Foundation

  • Information about primary myelofibrosis, polycythemia vera, essential thrombocythemia, and chronic myelogenous leukemia (CML)
  • Online support group and links to in-person support groups 

Multiple Myeloma Research Foundation

(203) 229-0464

Information about multiple myeloma and links to support groups.

National Organization for Rare Disorders (NORD)

(800) 999-6673
  • Support and information for those affected by rare diseases.  
  • Links to support networks and financial aid for various medical conditions.

Non-Hodgkin's Lymphoma Mailing List

An electronic discussion and support group for non-Hodgkin's lymphoma patients

The Myelodysplastic Syndromes Foundation

(800) 637-0839

Information about myelodysplastic syndromes.