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Resource Directory

BMT InfoNet has created a helpful directory of organizations that provide information and support to transplant patients and their loved ones. The resources below are organized by topic (thus, some organizations are listed more than once).

Click on the topic below that interests you to see the organizations listed in that section of the directory.  If you click on the name of the organization, it will take you to the group's web site.  Phone and email contact information are listed for each organization, as well as a brief description of services provided.

Topics include:

 

ABOUT TRANSPLANTATION

American Society for Blood & Marrow Transplantation

(847) 427-0224

Email: mail@asbmt.org

Professional association of stem cell transplant physicians. Evidence-based reviews and recommendations about optimal timing and type of transplant to treat patients with a variety of diseases.

Blood & Marrow Transplant Information Network (BMT InfoNet)

(847) 433-3313

(888) 597-7674 (toll-free)

Email: help@bmtinfonet.org

Patient handbooks and online information about autologousTaken from an individual's own tissues, cells, or DNA. and allogeneicTaken from different individuals of the same species. transplants. One-on-one peer support program (Caring Connections) for patients and family members. Online directory of Transplant Centers in the U.S. Telephone counseling. Help with insurance and financial difficulties. Regional symposiums for transplant survivors, and webcasts on issues affecting transplant survivors. Available in Spanish: Book about transplantation and webcasts about adult and pediatric transplants.

BMT-Support

(806) 798-0600

Email: bmt-support@bmtsupport.org

Online chat room for transplant patients and caregivers. Meets Tuesdays, Thursdays, and Saturdays at 8:30 pm ET.

Be the Match®

(612) 362-3410

(888) 999-6743 (toll-free)

Email: patientinfo@nmdp.org

Be the Match Registry is the world's largest listing of potential marrow donors and donated cord blood units. Extensive information on becoming a donor, finding a donor, planning for transplant, caregiving, transplant centers, and survivorship. Programs and resources are available to allAcute lymphoblastic leukemia. patients (autologous, related and unrelated donor transplants). Resources are available in languages other than Englinsh.

Bone Marrow Transplant Online Community

Online discussion group for transplant patients, survivors and their families.

Center for International Blood and Marrow Transplant Research (CIBMTR)

(414) 805-0700

Email: inforequest@mcw.edu

Research organization with data on stem cell transplants and outcomes, as well as guidelines for long-term care of transplant survivors.

Explore BMT

Web site jointly sponsored by organizations providing information and services to transplant patients. Includes samples of publications and online services available on member web sites.

National Bone Marrow Transplant Link

(248) 358-1886

(800) 546-5268 (toll-free)

Email: info@nbmtlink.org

Peer support program for transplant patients and caregivers. Booklets on caregiving and transplant survivorship. Periodic telephone support groups for caregivers and people with chronicPersisting for a long time. GVHD.

U.S. Dept. of Health & Human Services, Health Resources and Services Administration (HRSA)

(888) 275-4772 (toll-free)

Email: ask@hrsa.gov

Data on transplants performed at specific centers, transplants performed in the U.S. for specific diseases and survival data. Also information about planning for transplant, finding a donor, being a donor and cord blood banking.

AMYLOIDOSIS

Amyloidosis Foundation

(248) 922-9610

(877) 269-5643 (toll free)

Email: info@amyloidosis.org

Online information about amyloidosis and treatment options.

Amyloidosis Online Community

Online discussion group for patients with Amyloidosis.

Amyloidosis Support Groups

(708) 987-7711

(866) 404-7539 (toll free)

Email: muriel@amyloidosissupport.com

Information about amyloidosis and links to support groups.

APLASTIC ANEMIA

Aplastic Anemia & MDS International Foundation, Inc.

(301) 279-7202
(800) 747-2820 (toll-free)
Email: help@aamds.org
Information about aplastic anemia and treatment options, peer support networks, and patient and family conferences. Scholarships for high school seniors planning to continue their education.

Be the Match®

(612) 362-3410
(888) 999-6743 (toll-free)
Email: patientinfo@nmdp.org
Information about severe aplastic anemia, treatment options and outcomes after transplant.

APPEARANCE

American Cancer Society

(800) 227-2345 (toll-free)
Email: Click Here
Some local chapters provide wigs to cancer patients free of charge. To locate your local office click on the Find Local ACS tab at the top of the web site or phone them.

Cancer and Careers

(646) 929-8032
Email: cancerandcareers@cew.org
Online information how and where to buy a wig, differences in wig construction, and caring for your wig.

CancerCare, Inc.

(800) 813-4673 (toll-free)
Email: info@cancercare.org
Free wigs (by appointment) at the Norwalk, CT, Long Island, NY and Ridgewood, NJ offices.

Locks of Love

(516) 833-7332
(888) 896-1588 (toll free)
Email: info@locksoflove.org
Wigs for children under age 21 who could not otherwise afford one.

Look Good Feel Better

(800) 395-5665 (toll-free)
(800) 227-2345 (toll free)
Email: Click Here
Local workshops for cancer patients that include a 12-step skin care and makeup lesson, nail care techniques, and professional advice on how to deal with hair loss using wigs, scarves, hats, hairpieces, and other accessories. Enter your zip code at the bottom of the web site to find a local program or phone them. Self-help kits available for patients living in areas where programs are not offered.

Wigs for Kids

(440) 333-4433
Email: info@wigsforkids.org
Wigs for children under age 19 who could not otherwise afford one.

BRAIN TUMORS

Brain Tumor Foundation for Children, Inc.

(404) 252-4107
Email: info@braintumorkids.org
Information about pediatric brain tumors. Financial aid for costs associated with medical care for a child with a brain tumor.

National Brain Tumor Society

Email: questions@braintumor.org
Information about various types of brain tumors and treatment options.

 

CANCER -GENERAL

American Cancer Society

(800) 227-2345 (toll-free)
Email: Click Here
Information on cancer prevention, reducing cancer risk, cancer types and treatment options, support programs and resources, and cancer research.

Association of Cancer Online Resources

Online discussion groups that enable people at various stages of cancer treatment to communicate with one another.

Cancer and Careers

(646) 929-8031
Email: cancerandcareers@cew.org
Tips on how best to share a cancer diagnosis with employers and co-workers, how to fix a resume gap, your rights to accommodation in the workplace, and employment search strategies.

CancerCare, Inc.

(800) 813-4673 (toll-free)
Email: info@cancercare.org
Publications, telephone counseling, support groups, workshops and limited financial aid.

Cancer Support Community

(202) 974-7999
(888) 793-9355 (toll-free)
Email: help@cancersupportcommunity.org
Information about various types of cancer, links to online and in-person support groups, and information for caregivers.

Imerman Angels

(312) 274-5529
(877) 274-5529 (toll-free)
Email: info@imermanangels.org
Peer support program for cancer patients and family members.

Livestrong Foundation

(877) 236-8820 general information (toll-free)
(855) 220-7777 one-on-one support (toll-free)
Email: livestrong@livestrong.org
Information and one-one-one support services for cancer survivors on topics such as managing physical and emotional challenges, insurance issues and fertility preservation.

National Cancer Institute (NCI)

(301) 435-3848
(800) 422-6237 (toll-free)
Email: cancergovstaff@mail.nih.gov
Federally funded agency providing extensive information about all types of cancer and treatment options. Information and help available in English and Spanish.

National Coalition for Cancer Survivorship (NCCS)

(877) 622-7939 (toll-free)
Email: Click Here
Advocacy organization for cancer survivors. Information on communicating with your doctor, advocating for yourself, insurance and employment rights.

OncoLink

Information on coping with cancer, cancer treatments, cancer research advances.

 

CAREGIVING

Be the Match®

(612) 362-3410
(888) 999-6743 (toll-free)
Email: patientinfo@nmdp.org
Information about caring for a transplant patient or survivor.

Blood & Marrow Transplant Information Network (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. Also webcasts about caregiving.

CancerCare, Inc.

(800) 813-4673 (toll free)
Email: info@cancercare.org
Podcasts and online and telephone support groups for caregivers of cancer patients.

Caregiver Action Network

(301) 942-6430
Email: info@caregiveraction.org
General information for caregivers.

Cancer Support Community

(202) 974-7999
(888) 793-9355 (toll-free)
Email: help@cancersupportcommunity.org
Information about caring for a cancer patient, links to support groups, and links to other caregiver organizations.

CaringBridge

Free web site for people dealing with an illness that enables them to chronicle their journey, communicate with family and friends, and organize volunteers.

Lotsa Helping Hands

Free web site to help organize volunteers.

My Med Schedule

Email: Click here

Phone: (800) 543-2230

Web site and mobile device app for tracking medication schedule.

National Bone Marrow Transplant Link

(248) 358-1886
(800) 546-5268 (toll-free)
Email: info@nbmtlink.org
Peer support and booklet on caring for a transplant patient.

 

CLINICAL TRIALS

EmergingMed

(212) 679-0072
(877) 601-8601 (toll-free)
Email: contactus@emergingmed.com
Free personalized education about, and search assistance for, clinical trials. Help available in English and Spanish.

National Cancer Institute (NCI)

(800) 422-6237 (toll-free)
Information about cancer 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 - Clinical Trials

Database of publicly and privately supported clinical trials around the world.

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

NIH Chronic GVHD Study Group

List of current chronic GVHD clinical trials submitted by members of the NIH chronic GVHD Study Group

 

CORD BLOOD DONATION AND BANKING

Be the Match®

(612) 362-3410
(888) 999-6743 (toll-free)
Email: patientinfo@nmdp.org
Information about donating cord blood for public use, or for use by a family member with a disease that may require a transplant.

Parent's Guide to Cord Blood Foundation

Information about banking umbilical cord blood for private or public use in the U.S. and abroad.

Viacord Sibling Connection Program

(800) 998-4226 (toll free)
(866) 668-4895 (toll free)
Email: info@viacord.com
Free cord blood collection and storage for families who have a child in need of a transplant who meets the program's eligibility requirements.

U.S. Dept. of Health & Human Services, Health Resources and Services Administration (HRSA)

(888) 275-4772 (toll-free)
Email: ask@hrsa.gov
Information on donating cord blood for public or private (family) use.

 

DONOR SEARCH & TESTING (Adult Marrow & Stem Cell)

Be the Match®

(612) 362-3410
(888) 999-6743 (toll-free)
Email: patientinfo@nmdp.org
Registry of unrelated donors worldwide. Information on becoming a donor & finding a donor including a tool (Matchview) for determining how many potential matches exist for you in the registry. Information on medical & age restrictions for unrelated donors.

Blood & Marrow Transplant Information Network (BMT InfoNet)

(847) 433-3313
(888) 597-7674 (toll free)
Email: help@bmtinfonet.org
Publications and online information on finding a donor and being a related or unrelated donor. Also webcasts on being a donor.

Caitlin Raymond International Registry

(508) 334-8969
(800) 726-2824 (toll-free)
Email: patients@crir.org
Help with unrelated donor searches and donor drives.

Kashi Clinical Laboratories

(877) 565-3287 (toll free)
Email: info@bonemarrowtest.com
Private testing for individuals interested in donating marrow or stem cells to a specific individual. Fee for service.

 

ESSENTIAL THROMBOCYTHEMIA (See Myeloproliferative Neoplasms)


FANCONI ANEMIA

Fanconi Anemia Research Fund

(888) 326-2664 (toll-free)
Email: info@fanconi.org
Information and support for patients with Fanconi Anemia.

National Heart, Lung and Blood Institute

(301) 592-8573
Email: nhlbiinfo@nhlbi.nhi.gov
Information about Fanconi Anemia and treatment options.

 

FUNDRAISING/FINANCIAL AID

Air Charity Network

(877) 621-7177 (toll free)
Email: request@angelflightcentral.org
Free air transportation for patients in financial need who must travel to receive medical treatment.

Alex's Lemonade Stand

(610) 649-3034
(866) 333-1213
Email: resources@alexslemonade.org
Travel funds for children treated at specific hospitals.

American Cancer Society

(800) 227-2345 (toll-free)
Email: Click Here
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.

Be the Match®

(612) 362-3410
(888) 999-6743 (toll-free)
Email: patientinfo@nmdp.org
Financial assistance for transplant patients who are using an unrelated donor. Funds available to help with donor search costs, as well as expenses during the first 12 months after transplant.

Blood & Marrow Transplant Information Network (BMT InfoNet) Team Mateo Fund

(847) 433-3313
(888) 597-7674 (toll free)
Email: help@bmtinfonet.org
Limited financial aid for patients and caregivers who have exhausted other sources of financial aid.

Bone Marrow Foundation

(800) 365-1336 (toll free)
(212) 838-3029
Email: TheBMF@BoneMarrow.org
Financial aid for donor searches, testing and collection, cord blood banking, medications and medical equipment, home and child care services, housing expenses and transportation.

Brain Tumor Foundation for Children, Inc.

(404) 252-4107
Email: info@braintumorkids.org
Financial aid for costs associated with medical care for a child with a brain tumor.

CancerCare, Inc.

(212) 712-8347
(800) 813-4673 (toll free)
Email: info@cancercare.org
Limited financial aid for cancer patients.

Children's Leukemia Foundation of Michigan

(248) 530-3000
(800) 825-2536 (toll-free in Michigan only)
Email: info@leukemiamichigan.org
Education, support and financial assistance for adult and pediatric patients with leukemia who live in Michigan.

Children's Organ Transplant Association

(812) 336-8872
(800) 366-2682 (toll free)
Email: cota@cota.org
Fundraising assistance for families with a child who needs a transplant.

Chronic Disease Fund

(877) 968-7233 (toll-free)
Email: admin@cdfund.org
Financial aid for drug co-payments, travel and lodging for patients with specific diseases including myeloma, myelodysplasia and myelofibrosis.

Joe's House

(877) 563-7468 (toll-free)
Email: info@joeshouse.org
Directory of lodging options near medical centers that provide discount rates to cancer patients.

Healthcare Hospitality Network

(800) 542-9730 (toll free)
Email: helpinghomes@nahhh.org
Referrals to free or low cost lodging near medical facilities.

HelpHOPELive

(800) 642-8399 (toll-free)
Email: contact@helphopelive.org
Fundraising assistance for patients with a catastrophic illness.

Leukemia and Lymphoma Society

(914) 949-5213
(800) 955-4572 (toll-free)
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.

Leukemia Research Foundation

(847) 424-0600
(888) 558-5385 (toll-free)
Email: info@lrfmail.org
Financial aid for patients with leukemia, lymphoma or myelodysplastic syndrome (MDS) who live within a 100-mile radius of Chicago or in the state of Illinois.

Lymphoma Research Foundation

(310) 204-7040
(800) 500-9976 (toll-free)
Email: Helpline@lymphoma.org
Financial aid for medical expenses, transportation to treatment, lodging and childcare for patients with lymphoma or Hodgkin disease.

National Brain Tumor Society

(617) 924 9997
Email: questions@braintumor.org
Financial aid for patients with brain tumors.

National Children's Cancer Society Pediatric Oncology Program

(314) 241-1600
(800) 532-6459 (toll free)
Email: communications@thenccs.org
Help with non-medical expenses associated with pediatric cancer treatment.

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
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) 594-2056
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 including Diamond Blackfan Anemia, Gaucher Disease, Hodgkin Lymphoma, Hunter Syndrome, Maroteaux-Lamy Syndrome, PNH, Peripheral T-CellA type of immune cell that can attack foreign cells, cancer cells, and cells infected with a virus. T cells can also help control immune responses. A T cell is a type of white blood cell. Also called T lymphocyte and thymocyte. lymphoma and PKU.

National Patient Travel Center

(800) 296-1217 (toll free)

Email: info@patienttravel.org

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

Needy Meds

(800) 503-6897 (toll free)
Email: info@needymeds.org
List of companies that make their drugs available for free or at a discount to patients who cannot afford them.

Patient Access Network Foundation

(202) 347-9272
(866) 316-7263 (toll free)
Email: panfmanagement@lashgroup.com
Assistance with co-pays for medicines used to treat specific diseases. Patient must have insurance and meet income guidelines.

Patient Advocate Foundation

(800) 532-5274 (toll free)
Email: help@patientadvocate.org
National directory of financial resources for patients. National underinsured resource directory. National uninsured resource directory.

Patient Advocate Foundation Co-Pay Program

(757) 952-0118
(866) 512-3861 (toll free)
Financial aid to qualified patients to help pay for prescription co-pays.

Patient Services Incorporated

(800) 366-7741 (toll free)
Email: pslops@umeedpsi.org
Assistance with co-pays for patients with certain diseases, which change periodically.

RxAssist

List of patient assistance programs run by pharmaceutical companies to provide free medications to people who cannot afford to buy their medicine

United Way 211

List of United Way agencies providing housing, utilities and other financial support.

UnitedHealthcare Children's Foundation

(855) 698-4223
Email: customerservice@uhccf.org
Assistance with medical expenses not covered by insurance for patients up to age 16 who have health insurance.

 

GRAFT-VERSUS-HOST DISEASE (GVHD)

Blood & Marrow Transplant Information Network (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
Information about cause, symptoms and treatment of GVHD.

Boston Foundation for Sight

(781) 726-7337
Email: Click Here
Offers PROSE treatment for patients with severe GVHD in the eyes at several locations in the U.S.

GVHD Online Community

Online discussion group for people with GVHD.

Meredith Cowden Foundation

(330) 864-1978
Email: info@cowdenfoundation.org
Annual educational meeting for healthcare professionals and patients about chronic GVHD.

National Bone Marrow Transplant Link

(248) 358-1886
(800) 546-5268 (toll-free)
Email: info@nbmtlink.org
Webcasts and podcasts about GVHD. Periodic telephone support groups for patients with GVHD.

National Cancer Institute GVHD Study

(301) 402-4899
Email: sp326h@nih.gov
Ongoing study evaluating factors that contribute to chronic GVHD outcomes. Patients with chronic GVHD get a free, comprehensive medical evaluation and recommendations for appropriate follow up care by their local physician.

NIH Chronic GVHD Study Group

List of current chronic GVHD clinical trials submitted by members of the NIH chronic GVHD Study Group.

 

IMMUNE DEFICIENCY DISEASES

Be the Match®

(612) 362-3410
(888) 999-6743 (toll-free)
Email: patientinfo@nmdp.org
Information about marrow & stem cell transplantation for SCIDSSevere combined immunodeficiency syndrome. and Wiskott-Aldrich Syndrome.

Immune Deficiency Foundation

(400) 321-6647
(800) 296-4433 (toll free)
Email: info@primaryimmune.org
Information regarding immunodeficiency diseases, locating a physician, clinical trials, peer support and available college scholarships.

National Organization for Rare Disorders (NORD)

(800) 999-6673 (toll free)
Email: orphan@rarediseases.org
Nurse counselors assist with questions about rare diseases, links with support networks for people with rare diseases.

 

INSURANCE & EMPLOYMENT

American Cancer Society

(800) 227-2345 (toll-free)
Email: Click here
Information about private health insurance, government-funded insurance plans, and options if you are uninsured.

Blood and Marrow Transplant Information Network (BMT InfoNet)

(847) 433-3313
(888) 597-7674 (toll free)
Email: help@bmtinfonet.org

Webcasts and online information about insurance options, searching for employment and retaining employment during and after transplant. Attorney referrals for patients needing help with insurance issues.

Cancer and Careers

(646) 929-8031
Email: cancerandcareers@cew.org
Tips on how best to share a cancer diagnosis with employers and co-workers, how to fix a resume gap, your rights to accommodation in the workplace, and employment search strategies after treatment.

Cancer Legal Resource Center

(213) 736-1334
(866) 999-3752 (toll free)
Email: DRLC@lls.edu
Information about insurance options and help with insurance denials of coverage.

HealthCare.gov

Online information about your current health insurance options, as well as information about upcoming changes in the healthcare law.

National Cancer Legal Services Network

Directory of free legal service organizations for cancer patients in some parts of the U.S.

Patient Advocate Foundation

(800) 532-5274 (toll free)
Email: help@patientadvocate.org
Publications, online information and telephone support for people with insurance, medical debt and job retention issues.

Triage Cancer

Email: Info@TriageCancer.org

Educational materials on the Affordable Care Act, Americans with Disabilities Act, Family and Medical Leave Act, disability insurance, insurance options by state and bankruptcy.

Your Benefits Advocate

(773) 684-9802
Email: susanloeb@yourbenefitsadvocate.com
Assistance with insurance, long-term disability and long-term care issues. Fee charged for service.

LEUKEMIA

Be the Match®

(612) 362-3410
(888) 999-6743 (toll-free)
Email: patientinfo@nmdp.org
Information about transplantation for various types of leukemia.

Children's Leukemia Foundation of Michigan

(248) 530-3000
(800) 825-2536 (toll-free for Michigan residents)
Email: info@leukemiamichigan.org
Education, support and financial assistance for patients with leukemia who live in Michigan.

Leukemia and Lymphoma Society

(800) 955-4572 (toll-free)
Email: infocenter@lls.org
Publications and online information, peer support groups and financial aid for patients with leukemia.

Leukemia Online Communities

Online discussion groups for people with leukemia. Select a specific type of leukemia under Online Communities on the home page.

Leukemia Research Foundation

(847) 424-0600
Email: info@lrfmail.org
Education, support and financial assistance for patients with leukemia within a 100-mile radius of Chicago or in the state of Illinois.

 

LYMPHOMA/HODGKIN DISEASE

Be the Match®

(612) 362-3410
(888) 999-6743 (toll-free)
Email: patientinfo@nmdp.org
Information about marrow & stem cell transplantation for lymphoma.

Cutaneous Lymphoma Foundation

(248) 644-9014
Email: info@clfoundation.org
Publications and online information about cutaneous lymphoma and links to online support groups.

Leukemia and Lymphoma Society

(800) 955-4572 (toll free)
Email: Email: infocenter@lls.org
Information, online and in-person peer support groups and financial aid for patients with lymphoma and Hodgkin disease.

Leukemia Research Foundation

(847) 424-0600
Email: info@lrfmail.org
Education, support and financial assistance for patients with lymphoma and Hodgkin disease.

Lymphoma and Hodgkin Disease Online Communities

Online discussion groups for people with Non-Hodgkin lymphoma, Mantle Cell lymphoma, Cutaneous T-Cell lymphoma and Hodgkin disease.

Lymphoma Research Foundation

(310) 204-7074
(800) 500-9976 (toll free)
Email: helpline@lymphoma.org
Information, peer support program and financial aid for patients with lymphoma and Hodgkin disease.

National Organization for Rare Disorders

(203) 744-0100
(800) 999-6673 (toll-free)
Email: orphan@rarediseases.org
Financial aid for patients with rare diseases including Hodgkin Lymphoma and Peripheral T-Cell lymphoma.

 

MULTIPLE MYELOMA

Chronic Disease Fund

(877) 968-7233 (toll-free)
Email: admin@cdfund.org
Financial aid for drug co-payments, travel and lodging for patients with specific diseases including myeloma.

International Myeloma Foundation

(818) 487-7455
(800) 452-2873 (toll free)
Email: TheIMF@myeloma.org
Publications and online information about myeloma, treatment options, and links to myeloma support groups.

Leukemia and Lymphoma Society

(800) 955-4572 (toll free)
Email: infocenter@lls.org
Publications, online information and support groups and financial aid for patients with multiple myeloma.

Multiple Myeloma Online Community

Online discussion group for people 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 (MDS, MYELODYSPLASIA)

Aplastic Anemia & MDS International Foundation, Inc.

(301) 279-7202
(800) 747-2820 (toll-free)
Email: help@aamds.org
Information about myelodysplasia, peer support networks, and patient and family conferences. Scholarships for high school seniors planning to continue their education.

Chronic Disease Fund

(877) 968-7233 (toll-free)
Email: admin@cdfund.org
Financial aid for drug co-payments, travel and lodging for patients with specific diseases including myelodysplasia.

Leukemia and Lymphoma Society

(800) 955-4572 (toll free)
Email: infocenter@lls.org
Publications and online information, peer support groups and financial aid for patients with myelodysplasia.

The Myelodysplastic Syndromes Foundation

(800) 637-0839 (toll free)
Publications and educational forums about MDS, and links to local support groups.

 

MYELOFIBROSIS (See Myeloproliferative Neoplasms)


MYELOPROLIFERATIVE NEOPLASMS

Chronic Disease Fund

(877) 968-7233 (toll-free)
Email: admin@cdfund.org
Financial aid for drug co-payments, travel and lodging for patients with specific diseases including myelofibrosis.

Leukemia and Lymphoma Society

(800) 955-4572 (toll free)
Email: infocenter@lls.org
Publications, online information, peer support groups and financial aid for patients with a myeloproliferative disorder.

MPN Advocacy & Education International

(517) 899-6889
Email: abrazeau@mpnadvocacy.com
Online information about myeloproliferative disorders and links to support groups

Myeloproliferative Neoplasms Online Community

Online discussion group for people with multiple myeloma.

 

NEUROBLASTOMA

National Cancer Institute

(301) 435-3848
(800) 422-6237 (toll-free)

Email: cancergovstaff@mail.nih.gov

Fact sheet about neuroblastoma.

Neuroblastoma Online Community

Online discussion group for parents of children with neuroblastoma.

 

PEDIATRIC RESOURCES - GENERAL

American Childhood Cancer Organization

(301) 962-3520
(855) 858-2226 (toll free)
Email: staff@acco.org
Information about pediatric cancers, treatment options, and potential long-term complications. Resource for parents, children, and teens.

Blood & Marrow Transplant Information Network (BMT InfoNet)

(847) 433-3313
(888) 597-7674 (toll-free)
Email: help@bmtinfonet.org
Print and online information about preparing a child for transplant and survivorship issues after transplant. Webcasts about pediatric transplants, including one in Spanish.

Be the Match®

(612) 362-3410
(888) 999-6743 (toll-free)
Email: patientinfo@nmdp.org
Print, online and electronic media information about pediatric transplants.

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

A comprehensive guide identifying 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 and resources regarding pediatric cancers, treatment options, and side effects.

Leukemia & Lymphoma Society

(800) 955-4572 (toll free)
Email: infocenter@lls.org
Publications and online information about pediatric blood cancers , the Stem Cell Transplant Coloring Book, the Trish Greene Back to School Kit to prepare classmates for a child's return, and resources for teens and young adults.

National Children's Cancer Society

(314) 241-1600
(800) 532-6459 (toll free)
Email: communications@thenccs.org
Financial assistance, online community and survivorship information for parents of pediatric cancer patients. Scholarships for pediatric cancer survivors.

SuperSibs!

(847) 462-4742
(888) 417-4704 (toll free)
Email: info@supersibs.org
Age-appropriate support for siblings (ages 4-18) of young cancer patients. Scholarships available for high school seniors.

Association of Cancer Online Resources

Online discussion group for parents of children with various pediatric cancers. Scroll down to Childhood Cancers and select the appropriate group.

 

POLYCYTHEMIA VERA (See Myeloproliferative Neoplasms)

 

RARE DISEASES

Immune Deficiency Foundation

(410) 321-6647
(800) 296-4433
Email: info@primaryimmune.org
Information regarding immunodeficiency diseases, locating a physician, clinical trials, peer support and available college scholarships.

National Organization for Rare Disorders (NORD)

(800) 999-6673 (toll free)
Email: orphan@rarediseases.org
Nurse counselors assist with questions about rare diseases, links with support networks for people with rare diseases.

National Institutes of Health Office of Rare Diseases Research

(301) 402-4336
(888) 205-2311 (toll free)
Email: ordr@nih.gov
Information about genetic testing, finding a medical specialist for a rare disease and links to organizations supporting patients with rare diseases.

Madison's Foundation

(310) 264-0826
Email: getinfo@madisonsfoundation.org

Information and support for parents of children with rare disorders.

Shwachman-Diamond Syndrome Foundation

(888) 825-7373 (toll free)
Email: info@shwachman-diamond.org
Information and peer support for parents of patients with an immune Shwachman-Diamond Syndrome.

 

SICKLE CELL ANEMIA

American Sickle Cell Anemia Association

(216) 229-8600
Print material about sickle cell disease, testing and links to support groups throughout the U.S.

Be the Match®

(612) 362-3410
(888) 999-6743 (toll-free)
Email: patientinfo@nmdp.org
Information about stem cell transplants for sickle cell disease.

National Heart, Lung and Blood Institute

(301) 592-8573
Email: nhlbiinfo@nhlbi.nih.gov
Information about sickle cell disease, treatment options and clinical trials.

 

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.

Waldenstrom's Macroglobulinemia Online Community

Online discussion group for patients with Waldenstrom's Macroglobulinemia.

 

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.

Fertile Hope

(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.

Livestrong Foundation

(877) 236-8820 general information (toll-free)
(855) 220-7777 one-one support (toll-free)
Email: livestrong@livestrong.org
Information and one-one-one support services for cancer survivors including advice on managing physical and emotional challenges, insurance issues and fertility preservation.

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
Email: grants@thesamfund.org
Financial aid and online support for young adults who have been through cancer treatment. Links to resources about family building after treatment, financial aid and survivorship support.