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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

Clinical Trials

Bone Marrow, Stem Cell, Cord Blood Donors

Family Caregivers

Peer Support and Counseling

Financial Aid/Fundraising Help

Survivorship Resources

Pediatric Resources

Young Adult Resources

Disease Information

PREPARING FOR TRANSPLANT

Blood & Marrow Transplant Information Network (BMT InfoNet)

(847) 433-3313

(888) 597-7674 (toll-free)

Email: help@bmtinfonet.org

  • Patient handbook that explain what to expect when going through trans[;ant:
  • Caring Connections: A peer support for patients and family members
  • Transplant Center Directory
  • Individual Counseling
  • American Society for Blood & Marrow Transplantation

    (847) 427-0224

    Email: mail@asbmt.org

    Guidelines on optimal timing and type of transplant for patients with various diseases.

    Be The Match®

    (612) 362-3410

    (888) 999-6743 (toll-free)

    Email: patientinfo@nmdp.org

    Information on becoming a donor, finding a donortransplant centers, and life after transplant. Resources are also available in languages other than English. 

    Center for International Blood and Marrow Transplant Network

    (414) 805-0700

    Email: contactus@cibmtr.org

    Data on transplant outcomes and post-transplant guidelines.

    U.S. Dept. of Health & Human Services

    (888) 275-4772 (toll-free)

    Email: ask@hrsa.gov

    Historical data on transplants performed at specific centers, transplants performed in the U.S. for specific diseases and survival data.

    CLINICAL TRIALS

    Emerging Meds

    (212) 679-0072

    (877) 601-8601 (toll-free)

    Email: contactus@emergingmed.com

    Free personalized search assistance for clinical trials.

    National Heart, Lung and Blood Institute

    (301) 592-8573

    Email: nhlbiinfo@nhlbi.nih.gov

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

    National Institutes of Health

    Information about clinical trials at medical facilities world-wide.

    National Institutes of Health Center for Cancer Research

    301-594-2056

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

    BONE MARROW, STEM CELL, CORD BLOOD DONORS

    BMT InfoNet

    (847) 433-3313

    (888) 597-7674 (toll-free)

    Email: help@bmtinfonet.org

    Information on finding and being a related or unrelated donor. Talk with other donors through the Caring Connections Peer Support Program.

    Be the Match®

    (612) 362-3410

    (888) 999-6743 (toll-free)

    Email: patientinfo@nmdp.org

    Information for people age 18-44 on becoming an unrelated donor, or donating umbilical cord blood for public use. 

    Cord Blood Association

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

    DKMS

    (212) 209-6700

    (866) 340-3567

    Email: info@DKMS.org

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

    Kashi Clinical Laboratories

    (877) 565-3287 (toll-free)

    Email: info@bonemarrowtest.com

    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

    BMT InfoNet

    (847) 433-3313

    (888) 597-7674 (toll-free)

    Email: help@bmtinfonet.org

    Print and online information about preparing to care for a transplant patient and caring for transplant survivors and webcasts about caregiving. 

    Be the Match®

    (612) 362-3410

    (888) 999-6743 (toll-free)

    email: patientinfo@nmdp.org

    Information about caregiving including Caregiver Companion or Parent’s Companion program that provides a tool kit and weekly coaching for caregivers after transplant.

    Cancer Support Community

    (202) 659-9709

    (888) 793-9355 (toll-free)

    Email: help@cancersupportcommunity.org

    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

    (651) 452-7940

    Email: customercare@caringbridge.com

    Website to organize volunteers and allow patients to keep in touch with family and friends during treatment.

    Lotsa Helping Hands

    Website to organize volunteers during treatment.

    My Med Schedule

    (800) 543-2230 (toll-free)

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

    PEER SUPPORT AND COUNSELING

    BMT InfoNet Caring Connections Program

    (847) 433-3313

    (888) 597-7674

    Email: support@bmtinfonet.org

    One-on-one peer support for transplant patients and their caregivers. Connect by phone or email.

    American Psychosocial Oncology Society Help Line

    (866) 276-7443

    Email: info@apos-society.org

    Connects cancer patients with trained counselors. 

    Association of Cancer Online Resources

    Online list-servs for people with various types of cancer, including a group for transplant patients.

    Smart Patients

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

    FINANCIAL AID/FUNDRAISING HELP

    Air Charity Network

    (877) 621-7177 (toll-free)

    Email: request@angelflightcentral.org

    Free air transport for patients in financial need who must travel for medical treatment.

    Alex’s Lemonade Stand

    (610) 649-3034

    (866) 333-1213 (toll-free)

    Email: resources@alexslemonade.org

    Travel funds for children treated at specific hospitals.

    American Cancer Society

    (800) 227-2345 (toll-free)

    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

    Email: info@andreriveroflife.org

    Financial aid for single parents of pediatric patients receiving treatment at specific hospitals.

    Be The Match®

    (612) 362-3410

    (888) 999-6743 (toll-free)

    Email: patientinfo@nmdp.org

    Financial help for unrelated donor search and testing costs, as well as expenses incurred by patients transplanted with an unrelated donor during the first 12 months after transplant.

    BMT InfoNet Patient Assistance Fund

    (847) 433-3313

    (888) 597-7674 (toll-free)

    Email: help@bmtinfonet.org

    Grants for transportation to medical care, housing, food and utility expenses during first 12 months after transplant. Priority given to patients whoare unable to access funds from other organizations.

    Bone Marrow Foundation

    (212) 838-3029

    (800) 365-1336 (toll-free)

    Email: TheBMF@BoneMarrow.org

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

    CancerCare, Inc

    (212) 712-8347

    (800) 813-4673 (toll-free)

    Email: info@cancercare.org

    Financial aid for cancer patients.

    Children’s Organ Transplant Association

    (812) 336-8872

    (800) 366-2682 (toll-free)

    Email: cota@cota.org

    Fundraising help for a child who needs a transplant.

    The Double Hit Lymphoma Foundation

    (773) 574-3073

    Email: connect@tdhlf.org

    Help with travel expenses for double hit lymphoma patients.

    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 (toll-free)

    Email: bquinn@hhnetwork.org

    Referrals to free or low cost lodging near medical facilities.

    HelpHOPELive

    (800) 642-8399 (toll-free)

    email: contact@helphopelive.org

    Fundraising help for patients with a catastrophic illness.

    Joe’s House

    (877) 563-7468 (toll-free)

    Email: info@joeshouse.org

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

    The Leukemia and Lymphoma Society

    (914) 949-5213

    Email: infocenter@lls.org

    Financial aid for treatment-related expenses and help with insurance co-pays for patients with leukemia, lymphoma, Hodgkin disease, multiple myeloma, myelodysplastic syndrome (MDS), or a myeloproliferative neoplasm. 

    Lymphoma Research Foundation

    (310) 204-7040

    (800) 500-9976 (toll-free)

    Email: Helpline@lymphoma.org

    Financial aid for patients with lymphoma and Hodgkin Disease covering medical treatment, transportation to and from treatment, and childcare during treatment.

    The National Children’s Cancer Society

    (314) 241-1600

    (800) 532-6459 (toll-free)

    Email: communications@thenccs.org

    Help with travel, meals and lodging while a child is receiving medical care.

    National Foundation for Transplants

    (901) 684-1697

    (800) 489-3863 (toll-free)

    Email: info@transplants.org

    Fundraising assistance for transplant patients.

    National Heart, Lung and Blood Institute

    (301) 592-8573

    Email: nhlbiinfo@nhlbi.nih.gov

    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) 496-4345

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

    National Organization for Rare Disorders

    (203) 744-0100

    (800) 999-6673 (toll-free)

    Email: orphan@rarediseases.org

    Financial aid for patients with rare diseases.

    National Patient Travel Center

    (800) 296-1217 (toll-free)

    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

    (866) 316-7263 (toll-free)

    Email: panfmanagement@lashgroup.com

    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

    (866) 512-3861 (toll-free)

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

    Patient Services Incorporated

    (800) 366-7741 (toll-free)

    Email: psiops@umeedpsi.org

    Financial assistance to patients with specific diseases including Gaucher Disease, Mucopolysaccharidosis, primary immune deficiency disease, and chronic myelogenous leukemia to help with insurance co-pays. Covered diseases change periodically.

    United Way 211

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

    UnitedHealthcare Children’s Foundation

    (855) 698-4223 (toll-free)

    Email: customerservice@uhccf.org

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

    SURVIVORSHIP RESOURCES

    MANAGING YOUR HEALTH LONG-TERM

    BMT InfoNet

    (847) 433-3313

    (888) 597-7674 (toll-free)

    Email: help@bmtinfonet.org

    Online information and webcasts about managing long-term health challenges after transplant including graft-versus-host disease, pulmonary complications, learning and memory challenges, fatigue, sleep disorders, sexual health, pain and emotional difficulties. Also webcasts on employment and financial health

    Be the Match®

    (763) 362-3410

    (888) 999-6743 (toll-free)

    Email: patientinfo@nmdp.org

    Information about adjusting to life after transplant. Guidelines for long-term care available online, as a tool kit or app.

    Children’s Oncology Group Long-Term Follow-Up Guidelines

    A guide to managing late effects of pediatric cancer treatment.

    GRAFT-VERSUS-HOST DISEASE

    BMT InfoNet

    (847) 433-3313

    (888) 597-7674 (toll-free)

    Email: help@bmtinfonet.org

    Print and online information about cause, symptoms and treatment of GVHD. Several informative webcasts about chronic GVHD. Caring Connections program links patients who have GVHD with others who have had a similar experience and can provide emotional support. 

    Be The Match®

    (612) 362-3410

    (888) 999-6743 (toll-free)

    Email: patientinfo@nmdp.org

    Online information about GVHD.

    BostonSight

    (781) 726-7337

    Information about PROSE lenses for patients with severe ocular GVHD.

    National Bone Marrow Transplant Link

    (248) 358-1886

    (800) 546-5268 (toll-free)

    Booklet about graft-versus-host disease.

    National Cancer Institute GVHD Study

    (301) 402-4899

    Email: pavletis@mail.nih.gov

    Free medical evaluation by GVHD experts and follow up care recommendations.

    HELP WITH INSURANCE

    BMT InfoNet

    (847) 433-3313

    (888) 597-7674 (toll-free)

    Email: help@bmtinfonet.org

    Webcasts and online information about health insurance.

    Foundation for Health Coverage Education

    Personalized information about public and private health insurance options.

    HealthCare.gov

    Federal website about current health insurance options.

    Triage Cancer

    (424) 258-4628

    Email: info@triagecancer.org

    Information about the Affordable Care Act, disability insurance, and insurance options by state.

    EMPLOYMENT ISSUES

    BMT InfoNet

    (847) 433-3313

    (888) 597-7674 (toll-free)

    Email: help@bmtinfonet.org

    Webcasts on employment rights and disability insurance.

    Cancer and Careers

    (646) 929-8031

    Email: cancerandcareers@cew.org

    Tips on sharing a cancer diagnosis with employers, how to fix a resume gap, your rights to accommodation in the workplace and employment search strategies after treatment.

    Triage Cancer

    (424) 258-4628

    Email: info@triagecancer.org

    Educational materials about the Americans with Disabilities Act, Family and Medical Leave Act, and disability insurance.

    COMPLEMENTARY/INTEGRATIVE MEDICINE

    BMT InfoNet

    (847) 433-3313

    (888) 597-7674 (toll-free)

    Email: help@bmtinfonet.org

    Webcasts on various complementary therapies for transplant patients and survivors.

    National Center for Complementary and Integrative Medicine

    Research-based information on complementary and integrative medicine.

    Memorial Sloan Kettering Cancer Center

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

    PEDIATRIC RESOURCES

    Alex’s Lemonade Stand

    (610) 649-3034

    (866) 333-1213 (toll-free)

    Email: resources@alexslemonade.org

    Information and support for children diagnosed with cancer and their siblings.

    American Childhood Cancer Organization

    (301) 962-3520

    (855) 858-2226 (toll-free)

    Email: staff@acco.org

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

    Be the Match®

    (612) 362-3410

    (888) 999-6743 (toll-free)

    Email: patientinfo@nmdp.org

    Information on pediatric transplants.

    BMT InfoNet

    (847) 433-3313

    (888) 597-7674 (toll-free)

    Email: help@bmtinfonet.org

    Information about pediatric transplants.

    Children’s Oncology Group Long-Term Follow-Up Guidelines

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

    Cure Search for Children’s Cancer

    (800) 458-6223 (toll-free)

    Email: info@curesearch.org

    Information about pediatric cancers,treatment options and side effects.

    The Leukemia and Lymphoma Society

    (800) 955-4572 (toll-free)

    Email: infocenter@lls.org

    Information for pediatric cancer patients and their parents, including how to discuss a cancer diagnosis with a child, the 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

    (314) 241-1600

    (800) 532-6459 (toll-free)

    Email: communications@thenccs.org

    Survivorship information for parents of pediatric cancer patients. Scholarships for pediatric cancer survivors.

    YOUNG ADULT RESOURCES

    Children’s Oncology Group Long-Term Follow-Up Guidelines

    A comprehensive guide identifying late effects of pediatric cancer treatment, and recommendations for managing them.

    LIVESTRONG Fertility

    (512) 236-8820

    (855) 220-7777 (toll-free)

    Email: livestrong@livestrong.org

    Information about parenting options after cancer treatment. Financial aid for some fertility treatments.

    Oncofertility Consortium

    (312) 503-2504

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

    Stupid Cancer

    (877) 735-4673 (toll-free)

    Email: support@stupidcancer.org

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

    TheSAMFund

    (617) 938-3484

    (866) 439-9365 (toll-free)

    Email: grants@thesamfund.org

    Financial aid and links to resources about family building after treatment, financial aid and survivorship support.

    DISEASE INFORMATION

    American Society for Blood & Marrow Transplantation

    (847) 427-0224

    Email: mail@asbmt.org

    Guidelines on optimal timing and type of transplant for patients with various diseases.

    Be The Match®

    (612) 362-3410

    (888) 999-6743 (toll-free)

    email: patientinfo@nmdp.org

    Information about transplantation for patients with specific diseases including leukemia, lymphoma, Hodgkin disease, multiple myeloma, immune deficiency diseases and inherited disorders.

    AMYLOIDOSIS

    Amyloidosis Foundation

    (248) 922-9610

    (877) 269-5643 (toll-free)

    info@amyloidosis.org

    Information about amyloidosis and treatment options.

    Amyloidosis Support Groups

    (708) 987-7711

    (866) 404-7539 (toll-free)

    info@amyloidosissupport.org

    Information about amyloidosis and links to support groups.

    APLASTIC ANEMIA

    Aplastic Anemia & MDS International Foundation

    (301) 279-7202

    (800) 747-2820 (toll-free)

    email: help@aamds.org

    Information about aplastic anemia and treatment options and peer support.

    BRAIN TUMORS

    National Brain Tumor Society

    (617)-924-9997

    email:questions@braintumor.org

    Information about brain tumors andtreatment options.

    FANCONI ANEMIA

    Fanconi Anemia Research Fund

    (888) 326-2664 (toll-free)

    Email: info@fanconi.org

    Information and support network for patients with Fanconi Anemia.

    IMMUNE DEFICIENCY DISEASES

    Immune Deficiency Foundation

    (800) 296-4433 (toll-free)

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

    National Organization for Rare Disorders (NORD)

    (800) 999-6673 (toll-free)

    Information, support networks and financial aid.

    LEUKEMIA

    The Leukemia and Lymphoma Society

    (800) 955-4572 (toll-free)

    Email: infocenter@lls.org

    Information about leukemia, links to support groups and financial aid.

    LYMPHOMA/HODGKIN DISEASE

    Cutaneous Lymphoma Foundation

    (248) 644-9014

    Email: info@clfoundation.org

    Information about cutaneous lymphoma and links to online support groups.

    The Double Hit Lymphoma Foundation

    (773) 574-3073

    Email: connect@tdhlf.org

    Information about double hit lymphoma and funds to assist with travel to medical care.

    The Leukemia and Lymphoma Society

    (800) 955-4572 (toll-free)

    Emai:infocenter@lls.org

    Information, peer support groups and financial aid for patients with lymphoma and Hodgkin disease.

    Lymphoma Research Foundation

    (310) 204-7040

    (800) 500-9976 (toll-free)

    Email: Helpline@lymphoma.org

    Information about various lymphomas, Hodgkin disease and treatment

    options. Financial aid.

    Non-Hodgkin’s Lymphoma Cyberfamily

    Online discussion group for lymphoma patients and caregivers.

    MULTIPLE MYELOMA

    International Myeloma Foundation

    (818) 487-7455

    (800) 452-2873 (toll-free)

    Email: TheIMF@myeloma.org

    Information about myeloma and treatment options, and links to myeloma support groups.

    The Leukemia and Lymphoma Society

    (800) 955-4572 (toll-free)

    Email: infocenter@lls.org

    Information, peer support groups and financial aid for patients with multiple myeloma.

    Multiple Myeloma Research Foundation

    (203) 229-0464

    (866) 603-6628 (toll-free)

    Email: patientnavigator@themmrf.org

    Publications and online information about myeloma, treatment options, and links to myeloma support groups.

    MYELODYSPLASTIC SYNDROMES/MYELOPROLIFERATIVE DISORDERS

    Aplastic Anemia & MDS International Foundation, Inc.

    (301) 279-7202

    (800) 747-2820 (toll-free)

    Email: help@aamds.org

    Information about myelodysplasia, peer support, and patient and family conferences.

    The Leukemia and Lymphoma Society

    (800) 955-4572 (toll-free)

    Email: infocenter@lls.org

    Information, peer support and financial aid for patients with myelodysplasia or a myeloproliferative disorder.

    MPN Advocacy & Education International

    (517) 899-6889

    Email: abrazeau@mpnadvocacy.com

    Information about myeloproliferative disorders and links to support groups.

    The Myelodysplastic Syndromes Foundation

    (800) 637-0839 (toll-free)

    Educational forums and links to local support groups.

    SICKLE CELL ANEMIA

    American Sickle Cell Anemia Association

    (216) 229-8600

    Print material about sickle cell disease and links to support groups

    throughout the U.S.

    WALDENSTROM’S MACROGLOBULINEMIA

    International Waldenstroms’s Macroglobulinemia Foundation

    (941) 927-4963

    Email: info@iwmf.com

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

     

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