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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.

(To order a print version of the directory click here.)

Topics include:

 

ABOUT TRANSPLANTATION

(click on the name of the group to access their website)

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 autologous and allogeneic 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

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®

(763) 362-3410

(888) 999-6743 (toll-free)

Email: patientinfo@nmdp.org

Be the Match Registry is the world's largest registry of volunteer bone marrow, stem cell and cord blood donors. Extensive information on becoming a donor, finding a donortransplant centers, and life after transplant. Resources are also available in languages other than English.

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

Data on transplant outcomes and guidelines for long-term care of transplant survivors.

National Bone Marrow Transplant Link

(248) 358-1886

(800) 546-5268 (toll-free)

Email: info@nbmtlink.org

Booklets on GVHD and transplant survivorshio. Periodic telephone support groups for caregivers and people with chronic GVHD.

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

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

(click on the name of each group to access their website)

Amyloidosis Foundation

(248) 922-9620

(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

(click on the name of each group to access their website)

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.

BRAIN TUMORS

(click on the name of each group to access their website)

Pediatric Brain Tumor Foundation

(800)-253-6530
Email: info@curethekids.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.

CAREGIVING

(click on the name of each group to access their website)

Be the Match®

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

Blood & Marrow Transplant Information Network (BMT InfoNet)

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

(202) 454-3970
Email: info@caregiveraction.org
General information for caregivers.

CareZone

Online and mobile pp to help organize medications, appointments, important contacts, notes and other medical information.

Cancer Support Community

(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.

Family Caregiver Alliance

General information about caregiving for an ill family member.

Lotsa Helping Hands

Free web site to help organize volunteers.

Med Action Plan

Email: Click here

Phone: (800) 543-2230

Web site and mobile device app for tracking medication schedule.

My Pill Box

App to remind you when to take medications.

National Bone Marrow Transplant Link

(248) 358-1886
(800) 546-5268 (toll-free)
Email: info@nbmtlink.org
Booklet about other caregiver's experiences.

Seattle Cancer Care Alliance

Companion Guide for Caregivers and Family Members. Detailed information about managing caregiver responsibilities.

StandWith

Mobile app that streamlines communication between caregivers and supporters to post needs and information about the patient.

CLINICAL TRIALS

(click on the name of each group to access their website)

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

CORD BLOOD DONATION AND BANKING

(click on the name of each group to access their website)

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, including a list of public cord blood banks that accept donated cord blood for use by a patient needing a transplant.

Cord Blood Association

Information about donating cord blood or storing it for family use.

Parent's Guide to Cord Blood Foundation

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

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

Information on donating cord blood for public or private (family) use.

DONOR SEARCH & TESTING (Adult Marrow & Stem Cell)

(click on the name of each group to access their website)

Be the Match®

(612) 362-3410
(888) 999-6743 (toll-free)
Email: patientinfo@nmdp.org
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.

DKMS

(212) 209-6700

(800) 340-3567

Email:  info@deletebloodcancer.org

Recruits marrow and stem cell donors between the ages of 18 and 55. Provides donor testing kits and help with 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.

EMOTIONAL SUPPORT

(click on the name of each group to access their website)

American Psychosocial Oncology Society (APOS) Help Line

(866)-276-7443 (toll-free)

Connects cancer patients, their caregivers and advocacy organizations with psychiatrists, psychologists, nurses, social workers, and counselors skilled in the management of cancer-related distress.

BMT InfoNet Caring Connections Program

(847)-433-3313

(888)-597-7674 (toll-free)

Email: support@bmtinfonet.org

One-on-one peer support for patients and families going through a bone marrow, stem cell or cord blood transplant. Connect by phone or email with another person who had the same diagnosis, type of transplant and life situation.

 

Bone Marrow Transplant Online Community

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

 

ESSENTIAL THROMBOCYTHEMIA (See Myeloproliferative Neoplasms)

FANCONI ANEMIA

(click on the name of each group to access their website)

Fanconi Anemia Research Fund

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

FUNDRAISING/FINANCIAL AID

(click on the name of each group to access their web site)

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.

Andre Sobel River of Life Foundation

(310) 276-7111

Email:  Click here

Helps parents of pediatric patients at certain hospitals with urgent expenses to allow the parent to stay with their child during the hospitalization.

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) Patient Assistance Fund

(847) 433-3313
(888) 597-7674 (toll free)
Email: help@bmtinfonet.org
Financial asssistance for travel, lodging, utilities and food for transplant patients without access to other funding support.

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.

CancerCare, Inc.

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

Children's Organ Transplant Association

(800) 813-4673 (toll free)
Email: cota@cota.org
Fundraising assistance for families with any person age 21 or less who needs a transplant, as well as any adult with a monogenic disease requiring a transplant (eg. thalassemia, Sickle Cell disease, Tay Sachs, Huntington's Disease, Fragile X syndrome).

Double Hit Lymphoma Foundation

(773) 574-3073

Email:  connect@tdhlf.org

Help with travel expenses for patients with double hit lymphoma.

Good Days from CDF

(877) 968-7233 (toll-free)
Email: info@cdfund.org
Financial aid for drug co-payments, travel and lodging for patients with specific diseases including acute lymphoblastic leukemia, chronic granulatomous disease, essential thrombocytosis, myelofibrosis, multiple myeloma, and polycythemia vera.

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.

Joe's House

(877)-563-7468 (toll-free)

Email: info@joeshouse.org

Directory of lodging near medical centers that provide discounted lodging for cancer patients.

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-Cell 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)

(click on the name of each group to access their web site)

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.

BostonSight

(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 A. 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
Booklet 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.

IMMUNE DEFICIENCY DISEASES

(click on the name of each group to access their web site)

Be the Match®

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

Immune Deficiency Foundation

(410) 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

(click on the name of each group to access their website)

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.

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.

 

Foundation for Health Coverage Education

Personalized inforation about public and private health insurance options. Referrals to prescription assistance plans.

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

(312) 860-7417
Email: susanloeb@yourbenefitsadvocate.com
Assistance with insurance, long-term disability and long-term care issues. Fee charged for service.

LEUKEMIA

(click on the name of each group to access their website)

Be the Match®

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

Leukemia & Lymphoma Society

(800) 955-4572 (toll-free)
Email: infocenter@lls.org
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

(click on the name of each group to access their website)

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

Information about cutaneous lymphoma and links to online support groups.

Cutaneous Lymphoma Foundation

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

Double Hit Lymphoma Foundation

(773) 574-3073

Email:  connect@tdhlf.org

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

Leukemia & 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

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

MULTIPLE MYELOMA

(click on the name of each group to access their website)

Good Days from CDF

(877) 968-7233 (toll-free)
Email: info@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 & 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)

(click on the name of each group to access their website)

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.

Good Days from CDF

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

Leukemia & 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

(click on the name of each group to access their website)

Good Days from CDF

(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 & 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

(click on the name of each group to access their website)

Neuroblastoma Online Community

Online discussion group for parents of children with neuroblastoma.

PEDIATRIC RESOURCES - GENERAL

(click on the name of each group to access their website)

Alex's Lemonade Stand

(866) 333-1213 (toll free)

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 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.

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

(click on the name of each group to access their website)

Dyskeratosis Congenita Outreach, Inc.

Email:  dcoutreach@dcoutreach.org

Information and peer support program for families affected by dyskeratosis congenita.

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.

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 DISEASE

(click on the name of each group to access their website)

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.

WALDENSTROM'S MACROGLOBULINEMIA

(click on the name of each group to access their website)

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

(click on the name of each group to access their website)

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)

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

Oncofertility Consortium

(312) 503-2504

Counseling on fertility preservation options prior to treatment. List of fertility clinics that serve cancer patients.

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.

 

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