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Childhood Cancer Survivors

Organizations


The following excerpt is taken from Appendix B of Childhood Cancer Survivors: A Practical Guide to Your Future by Nancy Keene, Wendy Hobbie & Kathy Ruccione, copyright 2000 by O'Reilly & Associates, Inc. For book orders/information, call (800) 998-9938. Permission is granted to print and distribute this excerpt for noncommercial use as long as the above source is included. The information in this article is meant to educate and should not be used as an alternative for professional medical care.


Follow-up programs

Criteria used to add institutions to list:

  • Has a dedicated time and place for survivor clinic
  • Meets at least twice a month
  • Staffed by a doctor with experience in the late effects after treatment for childhood cancer
  • Has a nurse coordinator
  • Provides state-of-the-art screening for individual's risks of late effects
  • Provides referrals to appropriate specialists
  • Provides wellness education

California

Childrens Hospital Los Angeles
LIFE Program (Long-term Information, Follow-up, and Evaluation)
4650 Sunset Boulevard, #54
Los Angeles, CA 90027
(323) 669-2489
Kimberly Ward or Deborah Kass--coordinators
Cecilia Fu, MD
Sees both child and adult survivors; provides referrals for adults.

Lucille Packard Children's Hospital at Stanford
Long-Term Follow-Up Clinic
725 Welch Road
Palo Alto, CA 94304
(650) 497-8953
Tina Baggott--coordinator
Neyssa Marina, MD
Provides referrals for both child and adult survivors. Only has one afternoon clinic a month; lost funding.

City of Hope National Medical Center
Long-Term Follow-up Clinic for Survivors of Childhood Cancer
1500 E. Duarte Road
Duarte, CA 91010
(626) 301-8426
Wendy Landier, RN, MSN, CPNP--coordinator
Smita Bhatia, MD

Florida

Nemours Children's Clinic
Hematology/Oncology Clinic
807 Nira Street
Jacksonville, FL 32207
(800) 767-5437, extension 2087
Annie Rini, RN, BSN--coordinator
Rotating doctors
Follows children up to age 21, then transitions to adult primary care providers.

Georgia

Children's Healthcare of Atlanta
Cancer Survivor Program
1405 Clifton Road
Atlanta, GA 30322
(404) 315-2717
Kathy Forte, RN MS CPNP--coordinator
Lillian Meacham, MD

Illinois

Children's Memorial Hospital
Long-Term Follow-up Program
2300 Children's Plaza
Chicago, IL 60614
(773) 880-4151
Barbara Ann Heib, RN--coordinator
Reggie Duerst, MD
Treats children and teens.

Children's Memorial Hospital
Northwestern Medical Faculty Foundation
Star Program for Young Adult Survivors
675 North St. Clair
Chicago, IL 60611
(312) 695-4979
Karen Kinahan, MS, RN--coordinator
Arlina Ahluwalia, MD
Treats survivors over 21 years old.

Maryland

Johns Hopkins Oncology Center
Long-Term Follow-Up Clinic
600 N. Wolfe Street
Baltimore, MD 21287
(410) 614-5062
Kathy Ruble, RN--coordinator
Cindy Schwartz, MD

Massachusetts

Dana-Farber Cancer Institute
David B. Perini, Jr. Quality of Life Clinic for Childhood Cancer Survivors
44 Binney Street
Boston, MA 02115
(617) 632-5124
Ellen E. Casey--coordinator
Lisa Diller, MD
Sees children and adults.

Michigan

University of Michigan
Department of Pediatric Hematology/Oncology
Long-Term Follow-Up Clinic
1500 East Medical Center Drive
Ann Arbor, MI 48109
(734) 936-9814
Marcia Leonard, RN, PNP--coordinator
Val Castle, MD

Minnesota

Fairview-University Children's Hospital
Long-Term Follow-Up Clinic
Harvard Street and East River Road
Minneapolis, MN 55455
(612) 625-4443
Nancy Youngren, RN--coordinator
Joseph Neglia, MD

New Jersey

University Medical Center
Tomorrow's Children's Institution
Care and Beyond
385 Prospect Avenue
Hackensack, NJ 07607
(201) 487-8987
Hope Castoria, RN
Beverly Ryan, MD
Sees children and adults.

New York

Memorial Sloan-Kettering Cancer Center
Long-Term Follow-Up Clinic
Department of Pediatric Oncology
1275 York Avenue
New York, NY 10021
(212) 639-8138
Charles Sklar, MD

University of Rochester Medical Center
Strong Children's Medical Center
Follow-Up Clinic
601 Elmwood Avenue
Rochester, NY 14642
(716) 275-2981
Cindy Proukou, RN, MSN, CPNP--coordinator
Andrea Hinkle, MD
Follows both child and adult survivors.

Roswell Park Cancer Center
Long-Term Follow-Up Project
Elm and Carlton
Buffalo, NY 14263
(716) 845-8011
Brenda Hall, RN, PNP--coordinator
Daniel Green, MD

Upstate Medical University
Kids Now Off Therapy
Pediatric Hematology/Oncology
750 E. Adams Street
Syracuse, NY 13210
(315) 464-7229
Sue Shaw, RN, MS, PNP--coordinator
Irene Cherrick, MD

North Carolina

Duke University Medical Center
Pediatric Hematology/Oncology
Erwin Road
Durham, NC 27710
(919) 684-3401 (appointments for children and teens)
(919) 684-8964 (appointments for adults)
Philip Rosoff, MD (children and teens)
Carlos DeCastro, MD (adults)

Ohio

Children's Hospital Medical Center
ATP Five-Plus Clinic
333 Burnette Avenue
Cincinnati, OH 45229
(513) 636-3512
Judy Correll, RN CPNP--coordinator
Cynthia DeLaat, MD
Sees both child and adult survivors; will refer.

Pennsylvania

Children's Hospital of Philadelphia
Long-Term Follow-Up Clinic
34th and Civic Center Boulevard
Philadelphia, PA 19401
(215) 590-3025
Wendy Hobbie--coordinator
Sees both child and adult survivors.

South Carolina

Medical University of SC Children's Hospital
FACT (Follow-up after Cancer Treatment)
135 Rutledge Avenue
PO Box 250558
Charleston, SC 29425
(843) 792-2957
Diane Dufour, MS, CPNP--coordinator
Sonja Muckensuss, RN, BSN
Julio Barredo, MD

Texas

Children's Medical Center of Dallas
After the Cancer Experience (ACE)
1935 Motor Street
Dallas TX 75235-7794
(214) 456-2948
Debra Eshelman, RN, CPNP, Coordinator
Gail Tomlinson, MD, PhD (children and teens)
Kevin Oeffinger, MD (adults)

M D Anderson Cancer Center
Long-Term Survivor Clinic
1515 Holcombe, Box 87
Houston, TX 77030
(713) 792-6619
Nita Burrer--coordinator
Norman Jaffe, MD
Steve Culbert, MD
Children and teenagers are followed at the Long-Term Survivor Clinic; adults are followed at the Life After Cancer Clinic.

Texas Children's Hospital
Late Effects Clinic
Hematology/Oncology
6621 Fannin Street
Houston, TX 77030
(832) 824-4571
Sarah Bottomly--coordinator
Jo Ann Dreyer, MD

Life After Cancer Program
Hematology & Oncology Center
Cook Children's Medical Center
901 Seventh Avenue, Suite 220
Fort Worth, TX 76104
(817) 810-2125
Lisa Bashore MS RN CPNP--coordinator
Jeffrey C. Murray, MD

Washington

Children's Hospital & Regional Medical Center
ACCESS Long-Term Follow Up Program
4800 Sand Point Way
Seattle, WA 98105
(206) 526-2106
Debra Friedman, MD

Wisconsin

University of Wisconsin Hospital and Clinics
Caring for Life Clinic
600 Highland Avenue
Madison, WI 53792
(608) 263-6200
Peggy Possin--coordinator
Diane Puccetti, MD

Service organizations

American Cancer Society
1599 Clifton Road NE
Atlanta, GA 30329-4251
(800) ACS-2345
http://www.cancer.org/

American Civil Liberties Union (ACLU)
125 Broad Street, 18th Floor
New York, NY 10004-2400
http://www.aclu.org/
Provides legal help to victims of discrimination.

Canadian Cancer Society 565 W. 10th Avenue
Vancouver, BC, Canada V5Z 4J4
(604) 872-4400
http://www.bc.cancer.ca/

Cancer Care
275 7th Avenue
New York, NY 10001
(800) 813-HOPE or (212) 302-2400
http://www.cancercare.org/
A nonprofit organization committed to helping people with cancer and their families. It provides a variety of services, including counseling, education, referrals, publications, and financial assistance.

Candlelighters Childhood Cancer Foundation
3910 Warner Street
Kensington, MD 20895
(800) 366-CCCF or (301) 962-3520
http://www.candlelighters.org/

Candlelighters Childhood Cancer Foundation Canada
55 Eglinton Avenue East, Suite 401
Toronto, ON, Canada M4P 1G8
(800) 363-1062 (Canada only) or (416) 489-6440
http://www.candlelighters.ca/

Childhood Cancer Ombudsman Program
PO Box 595
Burgess, VA 22432
Email: gpmonaco@rivnet.net
FAX: (804) 580-2502 or 2304
Outside review by experts in medicine, disability rights, insurance, and employment.

National Coalition for Cancer Survivorship
1010 Wayne Avenue
Silver Spring, MD 20910
(301) 650-8868
http://www.cansearch.org/
Organization that addresses the needs of long-term cancer survivors, and advocates for changes in healthcare to maximize survivors' access to optimal treatment and support. The coalition has an extensive publication list.

Wellness Community
2716 Ocean Park Boulevard, Suite 1040
Santa Monica, CA 90405
(310) 314-2555
http://www.la.wellnesscommunity.org/
The Wellness Community provides psychological and emotional support to cancer survivors and their families free of charge as an integral part of their medical care.

Organizations that provide information

Adoptive Families of America (AFA)
2309 Como Avenue
St. Paul, MN 55108
(800) 372-3300 or (651) 645 9955
http://www.adoptivefam.org/
Provides education, links, and publications on pre- and post-adoption topics.

American Society for Deaf Children
PO Box 3355
Gettysburg, PA 17325
(717) 334-7922 (Business V/TTY)
(800) 942-ASDC (Parent Hotline)
http://www.deafchildren.org/
A national organization of families and professionals advocating for high-quality programs and services for parents in making sound and informed choices to meet their children's needs.

Amputee Coalition of America (ACA)
900 East Hill Avenue, Suite 285
Knoxville, TN 37915-2568
(888) 267-5669 or (423) 524-8772
http://www.amputee-coalition.org/
The mission of the ACA is to reach out to people with limb loss, to educate and empower them to lead rich, productive lives, to advocate on their behalf, and to develop and disseminate the resources necessary to accomplish these goals. The new ACA web site features information about the Amputee Coalition of America, access to the National Limb Loss Information Center, the ACA National Peer Network, and sites concerned with limb loss research and statistics.

Cancer Cured Kids
PO Box 189
Old Westbury, NY 11568
(516) 484-8160
Organization dedicated to the quality of life of kids who have survived cancer. Cancer Cured Kids supplies information about the educational and psychosocial needs of survivors.

Cancervive
6500 Wilshire Boulevard, Suite 500
Los Angeles, CA 90048
(310) 203-9232
Helps cancer survivors face and overcome the challenges of survivorship.

Chai Lifeline/Camp Simcha
151 W. 30th Street
New York, NY 10001
(212) 465-1300 or (800) 343-2527
http://www.chailifeline.org/
National nonprofit organization dedicated to providing support service programs to Jewish families. Some of the many services provided are medical referrals, support groups, respite program, negotiating insurance claims, financial aid, transportation, a kosher camp for children with cancer, and more.

Disabled Sports USA
451 Hungerford Drive
Rockville, MD 20850
(310) 217-9840
http://www.dsusa.org/
Provides opportunities for individuals with physical disabilities to gain confidence and dignity through participation in sports, recreation, and related educational programs.

The Disability Rights Education and Defense Fund
2212 Sixth Street
Berkeley, CA 94710
(800) 466-4232 or (510) 644-2555
Answers questions about the Americans with Disabilities Act and explains how to file a complaint.

The Endocrine Society
4350 East West Highway, Suite 500
Bethesda, Maryland 20814-4410
(301) 941-0200
http://www.endo-society.org/
Founded in 1916, the Endocrine Society promotes excellence in research, education, and the clinical practice of endocrinology.

American Council on Education--HEATH Resource Center
One Dupont Circle NW
Washington, DC 20036
(800) 544-3284
http://www.heath-resource-center.org/
HEATH is the national clearinghouse on post-secondary education for individuals with disabilities. It provides information about educational support services, policies, procedures, adaptations, and opportunities at American campuses and vocational-technical schools.

Job Accommodation Network ( JAN)
West Virginia University
918 Chestnut Ridge Road, Suite 1
PO Box 6080
Morgantown, WV 26506
(800) 526-7234 or (800) ADA-WORK
An international consulting service that provides free information about how employers can accommodate people with disabilities. The service also provides information on the Americans with Disabilities Act (ADA).

Hepatitis Liver Disease Help Line
75 Maiden Lane, Suite 603
New York, NY 10038
(800) 223-0179
http://www.liverfoundation.org/
The help line is run by the American Liver Foundation, a national, voluntary nonprofit health agency dedicated to preventing, treating, and curing hepatitis and all liver diseases through research, education, and support groups.

Learning Disabilities Association
4156 Library Road
Pittsburgh, PA 15234-1349
(412) 341-1515 (voice)
http://www.ldanatl.org/
A national, nonprofit organization that advances the education and general welfare of children and adults with learning disabilities.

Let's Face It
PO Box 29972
Bellingham, WA 98228
(360) 676-7325 (Director Betsy Wilson)
http://www.nas.com/~letsfaceit/
A national information and support group for people with facial differences.

Locks of Love
1640 S. Congress Avenue, Suite 104
Palm Springs, FL 33416
(888) 896-1588 or (561) 963-1677
http://www.locksoflove.org/
A nonprofit organization that provides hairpieces to financially disadvantaged children under the age of 18 suffering from long-term hair loss.

Medical Information Bureau
PO Box 105 Essex Station
Boston, MA 02112
(617) 426-3660
http://www.mib.com/
Maintains a database on health information of individuals for insurance companies. You can check the information on file by writing for or downloading from the Internet a "Request for Disclosure" (Form D-2). A single disclosure report costs $8.

National Cancer Institute (NCI)
Cancer Information Service
Building 31, Room 10A16
9000 Rockville Pike
Bethesda, MD 20892
(800) 4-CANCER
CANCERFAX: (301) 402-5874
http://www.nci.nih.gov/
Provides a nationwide telephone service for people with cancer, their families, friends, and the professionals who treat them. Answers questions and sends out informational booklets on a huge variety of cancer-related topics.

NCI's Office of Cancer Survivorship (OCS) is on the Web at http://dccps.nci.nih.gov/OCS/. Founded in 1996, OCS funds research on survivorship issues. OCS is dedicated to developing the infrastructure--such as databases and researcher networks--that supports the follow-up needed to study long-term survivors. OCS also supports programs to educate patients, physicians, and the public about cancer survivorship. Finally, much of the research supported by OCS is aimed at interventions that can lessen the burden of cancer survivors.

NCI's CANCERFAX provides treatment guidelines, with current data on prognosis, staging, and histologic classifications. To use CANCERFAX you need a fax machine with a telephone set to touch-tone dialing. You do not need to send anything. Pick up the receiver and enter the CANCERFAX number. A recording will come on to guide you.

NCI's PDQ (Physician Data Query)
(800) 4-CANCER
http://cancernet.nci.nih.gov/
PDQ is the National Cancer Institute's computerized listing of accurate and up-to-date information for patients and health professionals. PDQ provides information on the latest cancer treatments, research studies, and clinical trials.

National Association of Protection and Advocacy Systems
900 2nd Street NE, Suite 211
Washington, DC 20002
(202) 408-9514
For help with Social Security income, disability rights issues, or violations of special education law.

National Infertility Network Exchange
PO Box 204
East Meadow, NY 11554
(516) 794-5772
Nonprofit organization that offers peer support for infertile couples, referral to appropriate professionals, and educational materials.

National Insurance Consumer Helpline
(800) 942-4242
Provides free information and publications on all types of insurance.

National Lymphedema Network
2211 Post Street, Suite 404
San Francisco, CA 94115
(800) 541-3259 or (415) 921-1306
http://www.lymphnet.org/
A nonprofit center that provides information about the prevention and treatment of lymphedema. It provides publications, hotline, support groups, and a penpal program.

National Rehabilitation Information Center
1010 Wayne Avenue, Suite 800
Silver Spring, MD 20910
(800) 346-2742 or (301) 562-2400
Federally funded information service collects and distributes books, journal articles, and audiovisuals concerning disability and rehabilitation.

RESOLVE
1310 Broadway
Somerville, MA 02144
(617) 623-0744
http://www.resolve.org/
RESOLVE's mission is to provide timely, compassionate support and information to individuals who are experiencing infertility issues through advocacy and public education.

Self Help for Hard of Hearing People, Inc. (SHHH)
7910 Woodmont Avenue, Suite 1200
Bethesda, MD 20814
(301) 657-2248 voice, (301) 657-2249 TTY
http://www.shhh.org/
SHHH helps to make mainstream society more accessible to people who are hard of hearing. This consumer organization strives to improve the quality of hard-of-hearing people's lives through education, advocacy, and self help.

Sjogren's Syndrome Foundation
366 N. Broadway, Suite PH-W2
Jericho, NY 11753
(800) 4-SJOGREN or (516) 933-6365
http://www.sjogrens.org/
The Sjogren's Syndrome Foundation provides practical information and coping strategies on how to minimize the effects of dry eyes and mouth. In addition, the Foundation is the clearinghouse for medical information about Sjogren's syndrome.

Support for People with Oral and Head and Neck Cancer (SPOHNC)
PO Box 53
Locust Valley, NY 11560-0053
(516) 759-5333
http://www.spohnc.org/
Nonprofit organization dedicated to meeting the needs of oral and head and neck cancer survivors.

The Organization of Parents Through Surrogacy
PO Box 611
Gurnee, IL 60031
(847) 782-0224
http://www.opts.com/
Provides information about surrogate parenthood.

Organizations that provide referrals

The Alliance of Genetic Support Groups
4301 Connecticut Avenue NW #404
Washington, DC 20008
(800) 336-GENE or (202) 966-5557
http://www.geneticalliance.org/
Nonprofit coalition of support groups, professionals, and consumers dedicated to promoting the interests of children, adults, and families with or at risk for genetic disorders. It specializes in linking people interested in genetic conditions with organizations that provide support and information.

The American Academy of Adoption Attorneys (AAAA)
PO Box 33053
Washington, DC 20033
(202) 832-2222
http://www.adoptionattorneys.org/
A national organization that provides referrals to adoption attorneys.

The American Association of Sex Educators, Counselors, and Therapists
PO Box 238
Mt. Vernon, Iowa 52314-0238
(319) 895-8407
http://www.aasect.org/
The AASECT office can direct you to a certified sexuality educator, counselor, or therapist in your area.

Hepatitis Foundation International (HFI)
30 Sunrise Terrace
Cedar Grove, NJ 07009-1423
(800) 891-0707
http://www.hepfi.org/
Provides referral to hepatologists (liver specialists) and gastroenterologists as well as information on vaccinations, diagnosis, treatments, and caring for your liver. HFI also gives referrals to over 400 support groups in North America.

National Employment Lawyer's Association
600 Harrison Street, Suite 535
San Francisco, CA 94107
http://www.nela.org/
A nonprofit, professional organization of more than 3,400 lawyers who represent individual employees in cases involving employment discrimination, wrongful termination, employee benefits, and other employment-related matters.

The National Society of Genetic Counselors (NSGC)
233 Canterbury Drive
Wallingford, PA 19086
(610) 872-7608
http://www.nsgc.org/
NSGC assists consumers in locating genetic counseling services.

Patient Advocate Foundation
753 Thimble Shales Boulevard, Suite B
Newport News, VA 23606
(800) 532-5274 or (757) 873-6668
http://www.patientadvocate.org/
Provides help with insurance problems, publications, and referrals to attorneys.

Federal government agencies

Equal Employment Opportunities Commission
1801 L Street NW, Room 9405
Washington, DC 20507
(800) 669-3362
Provides information on how to enforce your rights under the Americans with Disabilities Act.

National Health Information Center
(800) 336-4797
http://nhic-nt.health.org/
Health information resources in the federal government.

Rehabilitation Services Administration
United States Department of Education
Office of the Commissioner
330 C Street SW, Room 3028
Washington, DC 20202
(202) 205-5482
This agency is responsible for ensuring that state rehabilitation services comply with federal law.

Social Security Administration Hotline
(800) 772-1213

US Department of Justice Civil Rights Division
Office of the Americans with Disabilities Act
PO Box 66118
Washington, DC 20035
(800) 514-0301, (202) 514-0301, TDD (800) 514-0383
http://www.usdoj.gov/crt/ada/adahom1.htm
Specialists answer questions about Title I and Title II of the Americans with Disabilities Act.

US Public Health Service's Office on Women's Health
Hot line (800) 994-9662, TDD (888) 220-5446
http://www.4women.gov/
Resource center for the nation's 10 million disabled women. Offers information on disabilities, laws, statistics, access to healthcare, financial assistance, abuse, parenting, sexuality, and links to advocacy groups.


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