Bone Marrow and Stem Cell
Transplant Resource Directory
Survival rates are going up dramatically. Some people estimate there are now
around 10,000,000 cancer survivors in this country. Promising new treatments
are being announced almost monthly. The amount of resources available to
patients, families, and friends is truly amazing.
On
the pages that follow, you'll find one of the most
comprehensive resource directories ever compiled specifically for those who
are considering or are going to have a Bone marrow or stem cell transplant.
Please keep in mind, a listing in this resource section is not an
endorsement of any kind. We are simply providing the information to assist
you in making your own decisions. The claims by the Web sites and
organizations included are theirs, not ours. Also, Web sites simply
promoting a single product such as a book or tape or program have not, as a
rule, been included.
The
more informed you are, the better your chances of enjoying a long and happy
life. Be patient. Do your homework. Never stop learning.
If
you know of a great resource we’ve missed, e-mail the information to us:
mytransplant@sbcglobal.net.
About Cancer
www.cancer.about.com
Site
offers top cancer books and videos, drugs approved by the FDA, a guide to
making treatment decisions, and a database to search for doctors and
treatment centers.
AirLifeLine
www.airlifeline.org
877-AIR-LIFE
Coordinates free air travel for patients in need.
All About MDS
www.allaboutmds.com
Here you can find a
definition of myelodysplastic syndromes and detailed information on
diagnosing, treating, and living with these diseases. Has a list of
questions to ask your doctor.
ALS Association
(amyotrophic lateral sclerosis)
www.alsa.org
818-880-9007
Alzheimer’s Association
www.alz.org
800-272-3900
American
Academy of Dermatology
(melanoma)
www.aad.org
888-462-DERM
American Brain Tumor Association
www.abta.org
800-886-2282
·
American Cancer Society
www.cancer.org
800-ACS-2345
One of the absolute best sites for resources. Information groups include:
Learn about cancer; treatment options; treatment decision tools; clinical
trials; and coping. Lots of stuff about BMTs and PBSCTs. Really explore this
site.
American Diabetes Association
www.diabetes.org
800-342-2383
American Foundation for Urologic Diseases
(bladder, prostate, kidney cancers)
www.afud.org
800-242-2383
American Health and Healing
www.americanhealthandhealing.com
“ . . . we have created this wellness Web portal to collect and organize the
best wellness practices . . .”
American Institute for Cancer Research
www.aicr.org
800-843-8114
“AICR is the cancer charity that fosters research on diet and cancer
prevention and educates the public about the results.” Offers A Resource
Guide for those Living with Cancer, free online.
American Lung Association
www.lungusa.org
212-315-8700
American Sickle Cell Anemia Association
www.ascaa.org
216-229-4500
American Society for Blood and
Marrow Transplantation
www.asbmt.org
"ASBMT is a national professional association that promotes advancement in
the field of blood and marrow transplantation." Worth a visit for their
great list of online resources.
·
American Society of Clinical Oncology
www.asco.org
Great resources section. Covers: Patient Support Organizations (tons);
Cancer Centers & Cooperatives; and Government Agencies.
·
Amgen
www.amgen.com
Offers Neulasta and Neupogen (G-CSF). Also makes Palifermin to reduce
severity of mucositis. Site provides patient information and links to
additional resources.
·
Aplastic Anemia & MDS International Foundation
www.aplastic.org
800-747-2820
Foundation provides emotional support, educational materials, clinical trial
listings, patient travel fund, and panel of experts.
Asians for Miracle Marrow Matches
www.asianmarrow.org
888-236-4673
·
Association of Cancer Online Resources
www.acor.org
Provides access to over 130 online communities (lists) for patients and
families who need support. Communicate with people who have been in your
spot. Even have a BMT Talk list.
Atlantic Breast Cancer Net
www.abcn.ca
"A web-based community news and information portal developed to meet an
information need for Atlantic Canadians affected by breast cancer."
·
Blood & Marrow Transplant Information Network
www.bmtinfonet.org
888-597-7674
“If a stem cell, bone marrow, or cord blood transplant is in your future,
BMT Infonet can help.” Has provided information and support to over 100,000
transplant patients since 1990. Sells books about transplants. Founder is a
survivor who did a BMT in the early 1990s to treat leukemia (AML).
·
BMTnet
www.bmtnet.org
“BMTnet is the new portal to blood and marrow transplantation resources on
the World Wide Web.” Provides links to bone marrow and stem cell transplant centers,
meetings, and conferences.
·
BMT Support Online
www.bmtsupport.org
586-575-9910
“Our mission is to uphold those who suffer the effects of illness, before
during and after transplant . . .” Has online chat room for those who’ve had
or are facing transplants.
·
Bone Marrow Foundation
(See The Bone Marrow Foundation)
Brain Tumor
Society
www.tbts.org
"Offers the latest information for the entire brain tumor community, from
newly diagnosed patients, to survivors, families, and healthcare
professionals."
Breast Cancer Recovery Foundation
www.bcrf.org
608-821-1140
Beyond the Cure
www.beyondthecure.org
Web site for childhood cancer
survivors. Discusses medical and educational late effects caused by
treatment. Covers current survivorship issues. Visitors can develop a
personal risk profile.
Cancer and
Leukemia Group B (CALGB)
www.calgb.org
"CALGB is a national clinical research group sponsored by the National
Cancer Institute. Its goal is to bring together clinical oncologists and
laboratory investigators to develop better treatments for cancer."
Cancer Buddies
Network
www.cancerbuddiesnetwork.org
"Online support group designed to put you in touch with your cancer
buddy so you can share ups and downs, laughter and tears with someone who
knows how it feels. Enables you to search for a cancer buddy for yourself,
your family, a friend, or carer. "
·
Cancer Federation
www.cancerfed.org
The federation is a non-profit organization providing
information, counseling, educational materials, and meetings for cancer
patients, their families and friends.
Cancer Hope Network
www.cancerhopenetwork.org
877-HOPENET
“We match patients with trained volunteers who have themselves undergone a
similar experience.” Survivor stories.
·
Cancer Research and Prevention Foundation
www.preventcancer.org
800-227-2732
“Our mission is the prevention and early detection of cancer through
scientific research and education.” Offers A Guide to Making
Decisions About Your Cancer Therapy, free online. Lists many resource
links on their site.
Cancer Research Institute
www.cancerresearch.org
800-992-2623
Click on Cancer HelpBook to find an 8-step program entitled What
to Do If Cancer Strikes.
Cancer Survivors Gathering Place
http://cancersurvivorsplace.org
"This site is for the people whose lives have been touched by cancer -
patient, family member, relative, friend. You may tell your story or ask a
question."
·
Cancer Survivors Network
www.acscsn.org
800-ACS-2345Sponsored by the American Cancer Society. You can take advantage of Talk
Shows & Stories, start your own, personal Web page, join in discussions
and chats, and share your interests and experiences with other survivors.
Cancer Warriors
www.cancerwarriors.org
Cancer Warriors is an organization
dedicated to helping families with children fighting cancer. The founder's
daughter was born with a rare, aggressive cancer, Embryonal
Rhabdomyosarcoma. Offers survivor stories, links to resources, and events.
·
CancerCare
www.cancercare.org
Offers information on drug assistance programs, financial assistance,
finding home care, finding hospice care, and finding transportation.
Describes Hill-Burton Program, which can arrange for free or low cost care.
Also outlines the AVONCares Program. Very good site.
·
CancerEducation.com
www.cancereducation.com
212-531-5960
Site has MedClip streaming audio lectures you can watch. Contains
information on drugs, finding a physician, and finding a treatment center.
·
Cancerfacts.com
www.cancerfacts.com
"This online resource for cancer patients, their families, and caregivers is
dedicated to delivering accurate and personalized information at a time of
need. The NexProfiler™ Tools for
Cancer help people with cancer make informed treatment decisions for an
optimal outcome."
·
CancerGuide
www.cancerguide.org
CancerGuide was started by a fellow survivor. The site has material on
clinical trials, survivors stories, how to use medical libraries, rare
cancers, and BMTs.
CancerHelp
www.cancerhelp.8m.com
Has links to Web sites that deal with specific types of cancers. Good online
resources list. There are mailing lists and support groups.
·
CancerIndex
www.cancerindex.org
“This non-profit guide contains over 100 pages and more than 4,000 links to
cancer-related information.”
CancerLinks
www.cancerlinks.com
510-649-8177
CancerNews
www.cancernews.com
"Dedicated to bring patients and their families the latest news and
information on cancer diagnosis, treatment, and prevention.
·
Cancerpage
www.cancerpage.com
Detailed material on BMTs and PBSCTs. Offers chat rooms and support groups.
CancerQuest
www.cancerquest.org
This site, sponsored by Emory University, was "created to teach the biology
of cancer." Could be too technical for most folks.
CancerRD
http://www.cancerrd.com
Site developed and maintained by a three time cancer survivor (neuroblastoma
and two breast cancers) who is a registered dietician. Funds research to
define nutritional strategies during and after treatment.
·
CancerSource.com
www.cancersource.com
617-399-4483
This site provides live chat events, message boards, mailing lists, support
groups, online cancer drug database, treatment information, clinical trial
data, and a cancer dictionary.
CancerTrack.com
www.cancertrack.com
Developed as a result of founder's
father's battle with lung cancer. Has news, links, and books on 27 different
cancers. Co-developed MediaTrack, a multi-media guide to what's going on in
the fight against cancer.
Cancervive
www.cancervive.org
800-4-TO-CURE
"Dedicated to providing support, public education, and advocacy to those who
experience this disease." You can share your story here.
Candlelighters Childhood Cancer Foundation
www.candlelighters.org
800-366-2223
“A
national, non-profit membership organization whose mission is to educate,
support, serve, and advocate for families of children with cancer, survivors
of childhood cancer, and the professionals who serve them.”
Chemo Care
www.chemocare.com
This is Scott Hamilton's site. "My new website is designed to provide the
latest information about chemotherapy to patients and their families,
caregivers, and friends."
Chronic Myelogenous Leukemia Support
www.cmlsupport.com
“Your source for up-to-date news and tips about imatinib mesylate (IM,
Gleevec, Glivec) and chronic myelogenous leukemia.” Sited maintained by a
CML survivor.
·
Coalition of Cancer Cooperative Groups
www.cancertrialshelp.org
877-520-4457
“Our mission is to increase survival and improve the quality of life of
cancer patients through increased participation in cancer clinical trials.”
Offers TrialCheck to help visitors determine trial eligibility and
location.
Coping with Cancer Magazine
www.copingmag.com
“Now in its 17th year of providing knowledge, hope, and inspiration . . .”
Corporate Angel Network
www.corpangelnetwork.org
866-328-1313
"We arrange for free air transportation for cancer patients traveling to
treatment centers using empty seats on corporate jets."
CureSearch
www.curesearch.org
"A comprehensive, educational resource for parents and families
affected by childhood cancer, offering disease, treatment and psychosocial
information."
Cure Magazine
www.curetoday.com
800-210-CURE
"Cancer Updates, Research, and Education is a quarterly magazine that
combines the science and humanity of cancer for those who have to deal with
it on a daily basis." Offers free subscription.
Cycle of Hope
(Lance Armstrong Foundation)
www.cycleofhope.org
512-236-8820
"Shows how learning facts will lessen your fears, help you regain control of
your emotions, and ultimately increase your chances of beating cancer."
Gilda's Club Worldwide
www.gildasclub.org
888-GILDA-4-U
" .
. . to provide meeting places where men, women, and children living with
cancer and their family and friends can join with others to build emotional
and social support."
Headcovers Unlimited
www.headcovers.com
580-226-5871
Sells hats, turbans, hats with hair, scarves, sleep hats, wigs, toupees,
eyebrows and eyelashes.
HealingWell.com
www.healingwell.com
"A thriving community and information resource for patients, caregivers, and
families coping with diseases, disorders, and chronic illnesses. Goal is to
help people on their way to "healing well".
Health Insurance Information
www.healthinsuranceinfo.net
Offers a publication entitled A Consumer Guide for Getting and Keeping
Health Insurance for every state and the District of Columbia.
Hospice Education Institute
www.hospiceworld.com
800-331-1620
“HEI
serves a wide range of individuals and organizations interested in improving
and expanding hospice and palliative care . . .”
·
Immune Deficiency Foundation
www.primaryimmune.org
800-296-4433
Go
to this Web site and click on the heading Publications. From this
page, click on Specific Medical Therapy. You’ll find an extensive,
online document about BMTS and PBSCTs.
I'm Too Young For This!
www.imtooyoungforthis.org
"Here's the deal. There are tons of awesome support services out there with
programs just for adolescents and young adults and we're going to tell you
about them because no one else does. Don't miss out on weekend spa
treatments, online forums and blogs, social networking, camping excursions,
and more."
International Cancer Alliance for
Research and Education
www.icare.org
800-ICARE61
This
site posts Clinical Therapy Reviews for over 40 types of cancer. Also
has Clinical Trials Matching Program.
·
International Myeloma Foundation
www.myeloma.org
800-452-CURE
Visit this site and get a free copy of their booklet, Autologus Bone
Marrow and Stem Cell Transplantation, parts 1 & 2. Offers free Myeloma
Info Pack and NexCura cancer profiler.
Kidney Cancer Association
www.kidneycancerassociation.org
800-850-9132
Kidscope
www.kidscope.org
404-892-1437
“One
of our goals is to help children successfully cope with the diagnosis and
treatment of a parent with cancer.”
Lance Armstrong Foundation
www.laf.org
512-236-8820
“LAF
exists to enhance the quality of life for those living with and beyond
cancer.”
·
Leukemia Links on ACOR
http://leukemia.acor.org
This is an excellent site for
information on BMTs. Offers journal articles, pictures, information on
tissue typing, survivor stories, a look at side-effects, and links to other
sites.
·
Leukemia Research Foundation
www.leukemia-research.org
"Our mission: To conquer leukemia, lymphoma, and myelodysplastic syndromes
by funding research into their causes and cures and to enrich the quality of
life of those touched by these diseases."
Look Good . . . Feel Better
www.lookgoodfeelbetter.org
800-395-LOOK
“LGFB is a free, non-medical, national public service program to help women
(and teens) offset appearance-related changes from cancer treatment.”
Lupus Foundation of America
www.lupus.org
202-349-1155
Lymphoma
Foundation Canada
www.lymphoma.ca
“Our organization is dedicated to providing support to individuals with
lymphoma, including Hodgkin's and non-Hodgkin's lymphoma. We support
lymphoma-specific research through the creation of fellowships."
Lymphoma Information Network
www.lymphomainfo.net
“Your comprehensive guide to Hodgkin’s and Non-Hodgkin’s Lymphoma.” Features
books, videos, survivor stories, and a glossary.
Lymphoma-net.org
www.lymphoma-net.org
Helpful information on the
different types, causes, and symptoms of Non-Hodgkin's lymphoma. Details on
available treatments.
·
Lymphoma Research Foundation
www.lymphoma.org
800-235-6848
Site
offers a 1-hour, online audio visual presentation on allogeneic and
autologus transplants.
MD Anderson Cancer Center
www.mdanderson.org
800-392-1611
Gives visitors an opportunity to search clinical trials. Type the word
transplants in the search box.
Make-A-Wish Foundation
www.wish.org
800-722-WISH
Grant the wishes of children with life-threatening medical conditions to
enrich the human experience with hope, strength and joy.
MAMM
www.mamm.com
A
magazine devoted to meeting the needs of women diagnosed with breast and
reproductive cancer.
Mayo Clinic
www.mayoclinic.org
"BMT team physicians are
hematologists/oncologists who are members of other disease-oriented groups
which helps in the evaluation and treatment of patients. This blood and
marrow transplant program is one of the largest in the world."
MedImmune
www.medimmune.com
Makes the drug Ethyol (amifostine) that reduces renal toxicity and severe
dry mouth associated with chemotherapies.
·
MEDLINEplus
(Part of the National Institutes of Health)
www.medlineplus.org
Click on the Health Topics tab. Next, click on the Procedures &
Therapies heading and select the subheading Bone Marrow
Transplantation. That will bring up over 30 articles on BMTs and PBSCTs.
Articles cover topics such as transplant basics, Q&A about transplantation,
choosing a provider, and facts and figures.
Memorial
Sloan-Kettering Cancer Center
www.mskcc.org
212-639-2000
Once
at the site, select the Transplantation tab to find thorough
information.
MMsupport.net
www.MMsupport.net
"This site has been created for
those of us with multiple myeloma, our caregivers, and friends, and families
to use as a resource."
Multiple Myeloma
Association
http://www.webspawner.com/users/myelomaexchange/
Has detailed information on leading cancer centers treating myeloma. These
centers do thousands of BMts and PBSCTs. Has a discussion list.
·
Multiple Myeloma Research Foundation
www.multiplemyeloma.org
203-972-1250
Site
offers a free, 40-page online booklet, Current and Emerging Trends in the
Treatment of Multiple Myeloma. It has a very good section on
transplantation.
(Go
you fellow myelomians!)
·
Myeloma Institute for
Research and Therapy
www.myeloma.uams.edu
"At the Myeloma Institute, we treat more patients with Myeloma than anywhere
else in the world, and have one of the most active bone marrow
transplantation centers for patients with numerous forms of cancer." (I did
my tandem transplants in 1991 and 1992 at UAMS. Thanks for everything,
y'all.)
·
National Bone Marrow Transplant Link
www.nbmtlink.org
800-LINK-BMT
You
can get a free copy of A Resource Guide For Bone Marrow/Stem Cell
Transplant - Friends Helping Friends. This document provides details on
financial aid, insurance, pediatric transplantation, and selecting a
caregiver.
·
National Cancer Institute
(Part of the National Institutes of Health)
www.cancer.gov
800-4-CANCER
From
the home page, click on Cancer Information, then click Treatment,
and click Types of Treatment. Select BMT and PBSCT Questions and
Answers.
National
Center for Complementary and Alternative Medicine
(Part of the National Institutes of Health)
www.nccam.nih.gov
888-644-6226
Here, you can review articles on understanding complementary and alternative
medicine, research, and clinical trials.
·
National Comprehensive Cancer Network
www.nccn.org
“The
NCCN, an alliance of 19 of the world’s leading cancer centers, is an
authoritative source of information to help patients and health
professionals make informed decisions about cancer care.”
National Foundation for Transplants
www.transplants.org
800-489-3863 ext. 101
“Organ and bone marrow transplant patients nationwide turn to NFT when they
need help in raising funds for transplant costs not covered by insurance.”
·
National Institutes of Health
www.health.nih.gov
Excellent documents on transplants, clinical trials database, resource
information, and drug information. NIH has over 40 toll-free information
lines for specific diseases and conditions. Plan to spend a lot of time at
this site.
·
National Marrow
Donor Program
www.marrow.org
800-MARROW2
“The
NMDP helps people who need a life-saving marrow or cord blood transplant. We
connect patients, doctors, donors and researchers to resources they need to
help more people live longer, healthier lives.” Has facilitated over 15,000
unrelated donor transplants.
National Multiple Sclerosis Society
www.nmss.org
National Ovarian Cancer Coalition
www.ovarian.com
888-OVARIAN
National Parkinson Foundation
www.parkinson.org
Native American Cancer Research
www.natamcancer.org
303-838-9359
Needy Meds
www.needymeds.com
215-625-9609
“Many drug manufacturers have what’s called Patient Assistance Programs.
These programs are designed to help those who can’t afford their medicines
obtain them at no cost or low cost.” Site contains information on over 200
drug company programs.
Nueva Vida
www.nueva-vida.org
202-223-9100
“The
mission of Nueva Vida is to inform, support, educate, and empower Latinas
affected by cancer, and to advocate for and facilitate the timely access to
state of the art cancer care . . .”
OncoLink
www.oncolink.org
215-349-5445
Offers an Ask the Expert feature whereby patients, family, or friends can
pose questions to oncologists.
Oncology Channel
www.oncologychannel.com
Detailed information by specific
disease or condition. One of Healthcommunities.com family of Web sites.
Strives to enhance the patient-physician relationship.
Oncology Nursing Society
www.cancersymptoms.org
Provides information on learning about and managing each of six common
cancer treatment symptoms: fatigue, anorexia, pain, depression, neutropenia,
and cognitive dysfunction.
Ontumor.com
www.ontumor.com
Lots
of resources for newly diagnosed cancer patients.
Pancreatic Cancer Action Network
www.pancan.org
877-272-6226
Patients Against Lymphoma
www.lymphomation.org
Provides “Evidence-based resources for patients and professionals,
independent of health industry funding.” Offers free online brochures and
tools.
Pediatric Oncology Resource Center
www.acor.org/ped-onc
"A Web site for parents, friends,
and family of children who have or had childhood cancer. Created by and for
people who know young people who are recovering from cancer."
·
People Living with Cancer
www.peoplelivingwithcancer.org
“Provides oncologist approved information on more than 50 types of cancer
and their treatments, clinical trials, coping, and side effects. Also
includes live chats, message board, drug database, medical dictionary, and
links to patient support organizations.”
·
Pharmaceuticals Research and
Manufacturers Association
www.helpingpatients.org
Sponsored by PhRMA and 48 member companies to help find patient assistance
programs for medicines.
Prostate Cancer Foundation
www.prostatecancerfoundation.org
"The Prostate Cancer Foundation funds high-impact research to find better
treatments and a cure for prostate cancer.
R.A. Bloch Cancer Foundation
www.blochcancer.org
Features on this site include: 12 questions to ask your doctor, patient’s
checklist for fighting cancer, Positive Mental Attitude quiz, and the
ability to be matched to a volunteer who has the same type of cancer.
RealTime Cancer
www.realtimecancer.org
"RealTime Cancer is committed to
building an independent and sustainable cancer resource that provides hope,
understanding, and inspiration to young adults ages 15 to 30. Here you can
share your experiences of the challenges and triumphs of battling cancer.
Share your sh*t and support one another".
Sarcoma Foundation of America
www.curesarcoma.org
301-520-7648
Key
the word transplant into the search box for a survivor story.
Sunstone Healing Center
www.sunstonehealing.net
Our mission is "to provide
life-enriching opportunities and supportive services for people touched by
cancer". The center, located in Tucson, offers retreats, support groups, and
information for survivors.
Susan G. Komen Breast Cancer Foundation
www.komen.org
Breast Care Helpline: 800-I’M Aware
The
foundation is a global leader in the fight against breast cancer. Provides
valuable resources for patients, survivors, and affiliates. Online message
board.
Taking the Fear Out of Cancer
http://www.takingthefearoutofcancer.com
Volunteer organization providing cancer awareness, education, and
information to those who have
cancer and those who are cancer free. Encourages patients to take an active
role in their cancer experience.
·
The Bone Marrow Foundation
www.bonemarrow.org
212-838-3208
"We
hope this site will provide you with the resources, information, programs
and services about bone marrow/stem cell transplantation you need whether
you are a patient, family member, friend, bone marrow donor or health care
professional."
·
The Cancer Information Network
www.thecancer.info
“The
Network is founded on the belief that proactive patients who educate
themselves to take an active role in decisions about their therapy can
effect their outcomes in a positive way.”
·
The Leukemia & Lymphoma Society
www.leukemia.org
800-955-4572
Search the word transplants here and you can review more than 300
articles. Offers a free, 68-page online booklet, Blood and Marrow
Transplants, with a glossary. Too many services to list. Visit or call.
Offers financial assistance.
The Mautner Project for Lesbians with Cancer
www.mautnerproject.org
Offers support groups, bereavement groups, survivor workshops, and a
national Peer Support Network.
·
The Myelodysplastic Syndromes
Foundation, Inc.
www.mds-foundation.org
Devoted to the prevention, treatment and study of myelodysplastic syndromes.
Lists MDS Centers of Excellence. Search for MDS clinical trials at this
site.
·
The Wellness Community
www.thewellnesscommunity.org
Offers professionally led support groups, educational workshops and
mind/body programs utilizing the Patient Active Concept.
United States Department of Health and Human Services
(Health Resources and
Services Admin.)
www.hrsa.gov/osp/dot/choosebmt.htm
Has
an online document called Considerations for Choosing a Bone Marrow
Transplant Provider. Contains over 30 points to consider when selecting
a provider for your transplant.
WebMD
www.webmd.org
Key
the words stem cell transplants into the search box at this site and
you’ll get over 70 professional articles on the subject. Well worth the time
to sift through them to find what you need.
Wisconsin Multiple Myeloma Support Group
www.madison.com/communities/multiplemyeloma/
"Let us assure you, armed with the
proper knowledge, good medical assistance, and the progress being made in
the treatment of multiple myeloma, you have an excellent chance of a good
quality of life for many years."
·
Sites of particular interest for transplant patients.
|
Contact
Information
Contains
over 140 invaluable tips to help transplant patients sail
through their procedures.