Bone Marrow Transplant Resources
AOSW-Bone Marrow Transplant
Special Interest Group
BMT Specific Resources
ExploreBMT
ExploreBMT is a great place to start when you are looking for information and support aobut blood and marrow transplantation. You can use ExploreBMT, an easy-to-search web portal, to browse resources and service3s from many respected organizations. You can then connect to the resources that you need most throughout your transplant journey, from diagnosis through survivorship.
Be the Match/National Marrow Donor Program (NMDP)
1-800-526-7809 or 612-627-5800
Facilitates marrow and blood stem cell transplants for patients who do not have a matched donor in their family. It is a net work of national and foreign donation centers, collection centers, transplant centers, and minority recruitment groups. Be the Match also offers patient advocacy, information on BMT, and telephone support and resources.
nbmtLink (National Bone Marrow Transplant Link)
1-800-LINK-BMT (800-546-5268)
The mission of the National Bone Marrow Transplant Link is to help patients, caregivers, and families cope with the social and emotional challenges of bone marrow/stem transplant from diagnosis through survivorship by providing vital information and personalized support services.
BMT infonet (Blood and Marrow Transplant Information Network)
1-888-597-7674
BMT Infonet provides survivors and their loved ones with emotional support and high quality, easy to understand information about bone marrow, peripheral blood stem cell and cord blood transplants.
The Bone Marrow Foundation
1-800-365-1336
The Bone Marrow Foundation was founded in 1992 with a signle vital goal: to improve the quality of life for those who are undergoing transplantation. All services are offered free to patients and their families. They offer a Patient Aid Program, One-to-One Funds, Supportline, Ask the Expert, Medical and Educational Handbooks.
Disease Specific Resources
The Leukemia and Lymphoma Society
1.800.955.4572 or 914.949.5213
Services include health education, peer-to-peersupport, support groups, and patient financial aidfor certain treatment-related expenses. It supportscancer research and provides information andsupport to patients with leukemia, lymphoma, andmultiple myeloma.
The Multiple Myeloma ResearchFoundation
Provides information about multiplemyeloma. Funds myeloma specificresearch.
Aplastic Anemia & MDS InternationalFoundation, Inc.
203.229.0464
A patient advocate and supportorganization providing hope, knowledge,and support to patients and families. Offers the expertise of medical experts,
scientific researchers, doctors, nurses,counselors, information specialists,
government agencies, political advocates,and pharmaceutical companies.
Lymphoma Research Foundation
212. 349.2910, 800.235.6848
310.204.7040, 800.500.9976
The Lymphoma Research Foundation (LRF)is the nation’s largest lymphoma-focusedvoluntary health organization devotedexclusively to funding lymphoma researchand providing patients and health careprofessionals with critical information onthe disease. LRF’s mission is to eradicatelymphoma and serve those touched by thisdisease.
SUPPORT RESOURCES
Lance Armstrong Foundation
877.236.8820 or for Cancer Support call:
LIVESTRONG SurvivorCare 866.673.7205
We empower the cancer community toaddress the unmet needs of cancer
survivors. To do so we encouragecollaboration, knowledge-sharing and
partnership. Then, we develop evidencebasedsolutions to address both the
common and unique problems survivors arefacing around the world.
CancerCare
1.800.813.HOPE (4673)
CancerCare is a national nonprofit, 501(c)(3) organization that provides free,
professional support services to anyone affected by cancer: people with cancer,
caregivers, children, loved ones, and the bereaved. CancerCare programs—includingcounseling and support groups, education,financial assistance and practical help—are provided by professional oncology social workers and are completely free of charge.
American Cancer Society
1.800.227.2345 or 404.320.3333
This organization supports cancer research,conducts educational programs,“Look Good, FeelBetter,” to patients and families. It also provides freeprinted information about cancer.
Online Communication Resources
Lotsa Helping Hands
A simple, immediate way for friends, family,colleagues, and neighbors to assist loved ones inneed. It's an easy-to-use, private group calendar,specifically designed for organizing helpers, whereeveryone can pitch in with meal delivery, rides, andother tasks necessary for life to run smoothly duringa crisis.
Caringbridge
A Web site designed to help patients keep in touchwith loved ones during treatment. Patients createtheir own web page free of charge. News about the
patient's progress can be posted to keep loved onesinformed.
Fertility
Fertile HOPE
1.866.965.7205
A national LIVESTRONG initiative dedicated toproviding reproductive information, support, andhope to cancer patients and survivors whose
medical treatments present the risk of infertility.
Children & Family
Kidskonnected.org
1.800.899.2866
Kids Konnected provides complimentarycounseling, summer camps, bereavementworkshops and cancer educational tools forchildren and teens with a parent with cancer, or who have lost a parent to cancer. KidsKonnected was founded on the premise thatwhen a parent gets cancer, the entire family
is affected, especially the children.
Bear Essentials
314.996.5517
This program provides age-appropriatesupport and tools to help children and parentscope with a parent's diagnosis and treatmentof cancer. Addresses the needs of children ages4 to 12.
Young Adult
Ulman Cancer Fund for Young Adults
410.964.0202 or 1.888.393-FUND
Provides support programs, educationand resources, free of charge, to benefit youngadults, their families and friends who areaffected by cancer and to promote awarenessand prevention of cancer. Also has a nationalcollege scholarship program.
Planet Cancer
This is a community of young adults withcancer who share insights, explore fears,and approach cancer with a sense of humor.
I’m too [young] for this (i[2]y)
Helps to decrease isolation of adolescentsand young adults with cancer by providinginformation on resources, supportorganizations, scholarships and financialaid, online forums and chat rooms, excursions,camps and retreats, youngadult blogosphere, coping literature, advocacytools, and more!
The Stupid Cancer Show
The voice of young adults with cancer
Live weekly streaming interactive,unscripted, unrehearsed, unapologetic
show for young adults with cancer.
Financial/Insurance/Employment
Social Security Administration
Contact your local office or 1.800.772.1213
If a person is likely to be unable to work for 12 monthswhile undergoing treatment, applying for Social SecurityDisability may be an option.
Centers for Medicare & Medicaid Services(CMS)
Medicare
1.800.MEDICARE (1.800.633.4227)
Provides helpful information about Medicare,Medicare health plans, prescription drug plans,and consumer rights and protections.
Medicaid
Contact your local Medicaid office
A State and Federally funded health carecoverage plan providing assistance to certainlow-income and medically vulnerable people.
MedicareRightsCenter
212.869.3850 or 202.544.5561
The largest independent source of health careinformation and assistance in the United States forpeople with Medicare. Services include enrollmentprojects, telephone hotline services, educationdepartment, public policy efforts, and mediacommunications.
Employment, Legal and Advocacy Resources
Cancer and Careers
Cancer and Careers is dedicated to empowering and educating people with cancer to thrive in their workplace by providing expert advice, interactive tools and educational events. Through a comprehensive website, free publications, career coaching, and a series of support groups and educational seminars for employees with cancer and their healthcare providers and coworkers, Cancer and Careers strives to eliminate fear and uncertainty for working people with cancer.
CancerLegalResourceCenter
800-THE-CLRC
The Cancer Legal Resource Center (CLRC) is a national, joint program of the Disability Rights Legal Center and Loyola Law School Los Angeles. The CLRC provides free information and resources on cancer-related legal issues to cancer survivors, caregivers, health care professionals, employers, and others coping with cancer.
The CLRC has a national, toll-free Telephone Assistance Line (866-THE-CLRC) where callers can receive free and confidential information about relevant laws and resources for their particular situation. Members of the CLRC's Professional Panel of attorneys, insurance agents, and accountants can provide additional assistance.
Patient Advocate Foundation
1.800.532.5274 or 757.873.6668
This serves as an active liaison betweenthe patient and his or her insurer, employer, orcreditors to resolve insurance, job discrimination,and/or debt crisis matters relative to theirdiagnosis.
Medication Assistance
Needy Meds
This site lists pharmaceutical manufacturerswho provide drugs free of charge to patientswith limited financial resources.
Complementary and Alternative Medicine
Health Journeys: The Guided ImageryResourceCenter
The latest news, insights and findings about guided imagery, meditation, hypnosis and other mind-body practices.
NationalCenter for Complementaryand Alternative Medicine (NCCAM)
1.888.644.6226 or 301.519.3153
TTY: 1.866.464.3615 (for hearingimpaired)
Fund-Raising Organizations
National Foundation for Transplants
1.800.489.3863 or 901.684.1697
We understand how frightening it is to deal with a health crisis, and we also realize how difficult it is to ask for help. That's why we make each patient a top priority, offering fundraising assistance and guidance to make the process a little easier.
HelpHOPELive (formerly NTAF)
1.800.642.8399
HelpHOPELive (formerly NTAF)is the place to fundraise for anyone dealing with the many challenges related to a transplant or catastrophic injury.We provide the consultation needed to raise funds to bridge the gap between what health insurance will pay and what is actually needed to heal, live and thrive.
AOSW-BMT SIG
Jane Dabney, LISW-S, OSW-C
Mary Crooks, LICSW
Updated June 2012