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Pediatric Hematopoietic Stem Cell Transplantation
Edited by Ronald M. Kline. 640 pp., illustrated. New York, Informa Healthcare, 2006. $229.95. ISBN 978-0-8247-2445-0. Reviewed in the June 14, 2007 issue of the NEJM.
Blood & Marrow Transplant Information Network (BMT InfoNet)
An excellent resource. What the site has to offer:
- Books, such as:
- Bone Marrow and Blood Stem Cell Transplants: A Guide for Patients. This guide discusses procedures, HLA typing, blood cell production, what the patient feels, emotional issues, etc., and includes a pediatric section.
- Autologous Stem Cell Transplants: A Handbook for Patients.
Newsletters. A quarterly newsletter for bone marrow, peripheral blood stem cell and cord blood transplant patients and survivors.
Helpful Services, such as:
- Patient-to-Survivor Link: Matches patients who are about to undergo a bone marrow, peripheral blood stem cell or cord blood transplant with survivors who are willing to provide emotional support.
- Help With Insurance Difficulties: For patients having difficulty securing insurance reimbursement for a bone marrow, peripheral blood stem cell or cord blood transplant.
Transplant Center Search Form: Directory of transplant centers in the US and Canada.
Drug Database: Lists many of the drugs used in transplants - why they are used and some possible side effects.
National Cancer Institute
Blood Stem Cell Transplants on the cancer.gov website.
A slide show on blood stem cell transplants. Educational, posted on the cancer.gov site (accessed 2011).
National Marrow Donor Program (NMDP)
Great information and helps on finding a matching donor. Has a section on childhood BMTs. This site (and the organization via media) also encourages people to join the registry as potential donors, and tells people exactly how they can join the registry and how the costs in so doing can be defrayed. It also has general information on transplantation, and links to the bmtinfo site for more detailed information.
What the site has to offer:
- Donor Information. What it involves, how it feels to donate, where to donate, etc.
- Patient Information.What the process involves, both as to finding a donor and the actual treatment.
- Online donor search tool to count matches of your six HLA types.
- Cord Blood FAQs.
- Patient Stories.
- Help in finding donors for allogeneic transplants.
- Insurance coverage information.
- Transplant Center access directory. Lists and compares transplant centers.
The Bone Marrow Foundation (BMF)
The BMF raises awareness of the need for bone marrow donors. It also helps patients who need transplants by providing financial aid, a resource directory, a literature search page, and support line and an ask the expert page.
- Patient Aid. Direct funding of $1000 to qualified applicants. Assistance in donor search, compatibility testing, cord blood banking, sperm banking, medication, medical supplies, home/child care, transportation, accommodations, lega fees, insurance premiums, approved living expenses.
- Resource directory. Contact information and/or web links to financial aid, bone marrow searches, insurance problems, fundraising, books on BMT.
International Bone Marrow and Cord Blood Search: Caitlin Raymond International Registry
University of Massachusetts Medical Center
A comprehensive resource for patients and physicians conducting a search for unrelated bone marrow or cord blood donor. This organization helps find donors; the website does not have a lot of technical information, although it has a good page of links to sites that do.
Parent's Guide to Choosing a Cord Blood Bank
Original content; a non-profit.
National Bone Marrow Transplant Link (NBMTLink)
"What to expect and how to get though it" is an account on the website written by a patient. Although not ped-specific, this site is a very good source of information. Emotional as well as medical aspects are covered. You can order books, a Survivor's Guide and a resource book for BMTs, from the site. Resources for patients are also listed.
University of Minnesota
Complete questions and answers, from medical to psychosocial, in the FAQs. Excellent and informative site.
The JLS Foundation
This informative site is written by the parents of a child who had a BMT. The links below take you directly to the BMT section and the quite excellent reference section.
ViaCord is a cord blood banking service, and provides free cord blood storage for five years for expecting parents who have a child that needs a transplant. The website offers general information on cord blood transplants, patient stories, information on emerging research, and research collaborations.
Granny Barb and Art's Leukemia Links
Great links, excellent and organized well. This site has links to journal articles as well as other types of web resources.
- A Parent's Guide To Choosing a Private Cord Blood Bank - on the umbilical cord blood site
- Asian American Donor Program
Technical information on transplants
- Bone Marrow Transplants: a Book of Basics For Patients - Blood and Marrow Transplant site (Formerly called the "BMT News" site.)
- understanding stem cell and bone marrow transplants - on what used to be the CancerBackup site
- Bone Marrow Donors Worldwide - Largely about the world-wide listings of bone marrow donors.
(Where to find them and how they work.)
- Search for an unrelated donor - NMDP site
- Donor Registries - on the BMF site
- American Bone Marrow Donor Registry
- Caitland Raymond International Registry
- Bone Marrow Donors Worldwide
Cord Blood Transplants
- Help With Insurance Difficulties - on the BMT InfoNet site
- Resource directory - on the BMF site. Contact information and/or web links to financial aid, bone marrow searches, insurance problems, fundraising, books on BMT.
- Patient Aid Program - on the NMDP site.
- What questions should I ask the treatment team and hospital? - on the JLS Foundation site
- A Directory of Transplant Centers - on the BMT InfoNet site