Blood & Marrow Transplant Information Network (BMT InfoNet)

Contact: 847-433-3313
Population served: Transplant patients, survivors and their caregivers in the U.S.
Other language(s): Spanish
Mission:

BMT InfoNet is dedicated to providing transplant patients, 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.

• Offers easy-to-understand information about bone marrow, peripheral blood stem cell and cord blood transplants
• Transplant Directory search tool
• Educational webcasts
• Caring Connections, a program that links people who are considering a transplant, or a family member, with others who have been through transplant and can offer support
• Counseling services to help patients understand treatment options and potential healthcare providers
• BMT InfoNet Drug Database is a guide that lists many of the drugs bone marrow, stem cell and cord blood transplants patients receive during treatment; it explains why they are used and some of the possible side effects.

• Patient Assistance Fund offers a limited amount of financial assistance for gas, food, rent or other necessities. Social workers may apply on behalf of a patient via phone or email at help@bmtinfonet.org

BMTSupport.org

Contact: Website only
Population served: People with an interest in bone marrow and stem cell transplantation, worldwide
Mission:

To motivate, empower and enlighten people with an interest in bone marrow transplantation through peer support, education and awareness of this difficult but potentially life-saving procedure.

• Offers an online “Chat Room” three times weekly to share information and network with others.

Cord Blood Registry

Contact: 888.CORD.BLOOD or 888.932.6568
Population served: Patients, families, caregivers
Other language(s): Spanish and Chinese
Mission:

To advance the clinical application of newborn stem cells by partnering with leading research institutions to establish FDA-regulated clinical trials, exclusive to CBR families, for conditions that have no cure today.

• Newborn Possibilities Program® offers free cord blood and tissue processing and five years of storage to qualifying families in the U.S.
• Genetic counselors are available to discuss your family’s medical history and to answer questions about how newborn stem cells might be applicable to your family.

Gift of Life Bone Marrow Foundation

Contact: 800-962-7769
Population served: Gift of Life is one of the nation’s public bone marrow registries helping children and adults find donors for bone marrow transplants.
Mission:

To facilitate transplantation of volunteer unrelated donor stem cells as curative therapy for patients around the world of all socioeconomic backgrounds, suffering from leukemia and a wide-range of life-threatening diseases.

• Provides information on becoming a stem cell donor
• Provides information and resources about transplants
• Provides search process and case management to assist health professionals find donor matches for patients.

HelpHOPELive

Contact: 800-642-8399
Population served: Patients in need of financial help for a stem cell transplant
Mission:

To enable patients and families to use community-based fundraising to meet uncovered medical expenses related to transplantation or catastrophic injury

• Will work to raise funds on behalf of a patient with blood cancer when there is a possibility for a marrow/stem cell transplant as treatment
• Also provides direct financial assistance: incentive grants (to recognize fundraising progress); emergency grants (one-time assistance for eligible patients).

Icla da Silva Foundation

Contact: 888-638-2870
Population served: Those in need of a stem cell transplant or anyone looking to be a bone marrow donor
Other language(s): Spanish, Portuguese
Mission:

To save lives by recruiting bone marrow donors and by providing support services to children and adults with leukemia and other diseases treatable by marrow transplants.

Myeloma Crowd

Contact: Website
Population served: Patients with myeloma and caregivers
Other language(s): Spanish
Mission:

To empower patients each step of their disease journey – from diagnosis, through education, care and on to a cure.

• Myeloma Crowd is a division of The CrowdCare Foundation, a patient-driven nonprofit organization.  It provides online disease, treatment, clinical trial and research information, telephone/web education, articles, e-newsletter, videos, monthly meet-ups, and Facebook groups.  The website lists financial resources and myeloma specialists.  It also offers HealthTree, a patient-powered software tool to manage disease-related information such as medical history, test results and more.

National Bone Marrow Transplant Link (nbmtLINK)

Contact: 800-546-5268 or 248-358-1886
Population served: Patients, caregivers who have had or will have a bone marrow/stem cell transplant in the U.S.
Other language(s): Spanish, French
Mission:

To help patients, caregivers, and families cope with the social and emotional challenges of bone marrow/stem cell transplant from diagnosis through survivorship by providing vital information and personalized support services.

• Offers educational publications, webcasts, online library
• Provides an extensive volunteer peer support program
• Offers Telephone Education and Support Group for Bone Marrow/Stem Cell Transplant Survivors: Coping with Chronic Graft versus Host Disease (4 week program).

National Marrow Donor Program and Be The Match (NMDP)

Contact: 888-999-6743; outside of the United States call 612-362-3410
Population served: Patients in need of bone marrow and/or umbilical cord blood transplants, worldwide
Mission:

Provides assistance to people in need of a bone marrow/umbilical cord blood transplants; and is dedicated to creating an opportunity for all patients to receive a transplant when they need it. NMDP operates the Be The Match Registry®, the world’s largest listing of potential marrow donors and donated cord blood units.

• Be The Match Foundation Patient Assistance Program, for patients who pursue a transplant through Be The Match®, may be eligible for financial aid programs to help pay for the cost of a donor search and for some post-transplant expenses
• Provides an extensive collection of education materials, webcast presentations
• Be The Match Patient Services has a team dedicated to helping you learn about marrow and cord blood transplant as a treatment option, the overall transplant process, and what to expect after transplant
• Peer Connect Program puts a patient/caregiver in touch with one of NMDP’s trained volunteers — who are transplant recipients and caregivers — to answer questions and share their own transplant experiences.
• The Caregiver's Companion Program- combines a useful toolkit with the personalized, confidential support of a caregiver coach who understands transplant and the caregiver role.
  • Receive a toolkit that includes the Caregiver’s Companion book with tips, ideas and stories from other caregivers
  • Be paired with a trained Be The Match® coach who will work with your schedule to find a time that’s best for you to talk by telephone.

The Bone Marrow Foundation (BMF)

Contact: 212-838-3029 or 800-365-1336
Population served: Transplant patients and families, caregivers, survivors
Mission:

To improve the quality of life for bone marrow, stem cell, and cord blood transplant patients and their families by providing vital financial assistance, emotional support, and comprehensive educational programs.

• Patient Aid Program may provide a small amount of funding to help patients with very limited incomes cover the costs of donor searches, compatibility testing, bone marrow harvesting, medications, home and child care services, medical equipment, transportation, cord blood banking, housing costs and other expenses associated with the transplant
• One-to-One Fund is a personal fund created for a specific patient. BMF administers and maintains the Fund, and can offer support with fundraising ideas
• Lifeline Project will post the patient’s photo and story on a webpage so people can donate money directly to the patient to help cover costs associated with the transplant
• Offers resource listings and list of transplant centers in the U.S.
• Provides SupportLine - a free service that connects patients and caregivers undergoing a transplant with patients and caregivers who are post-transplant
• Offers Ask the Expert - a question-and-answer service where patients can email questions to health professionals about bone marrow and stem cell transplantation
• Survivorship Program provides resources that can address the needs of all bone marrow, stem cell, and cord blood transplant survivors, their families, and caregivers. Includes online discussion forum and NYC-based in person support group
• Provides publications about transplantation and related topics.