The following organizations and/or their websites provide services, information, and referrals for survivors of childhood cancer. The list begins with general organizations, and then specific-topic organizations are listed alphabetically.

American Childhood Cancer Organization (ACCO)
P.O. Box 498
Kensington, MD 20895-0498
(855) 858-2226 or (301) 962-3520
www.acco.org

ACCO (formerly Candlelighters Childhood Cancer Foundation) provides support, education, and advocacy for children and adolescents with cancer, survivors of childhood/adolescent cancer, their families, and the professionals who care for them.

ACOR’s Site for Families of Survivors of Childhood Cancer
www.ped-onc.org/survivors

Hosted by ACOR, the Pediatric Oncology Resource Center offers articles about specific late effects of treatment for childhood cancer, an extensive section about education issues, links to informative websites and support groups, a list of clinics for survivors, and a bibliography of pertinent journal articles.

Beyond the Cure
www.beyondthecure.org

Beyond the Cure offers articles about school, medical issues, legal issues, relationships, health insurance, and more. The website also lists contacts by state for special education information. This organization holds Web conferences about different topics of interest to survivors and their parents; past webcasts are archived and available as audio files.

Cancer Care
275 Seventh Avenue
New York, NY 10001
(800) 813-HOPE or
(800) 813-4673
www.cancercare.org

Cancer Care, a nonprofit organization, provides a variety of services, including counseling, education, referrals, publications, and financial assistance.

CancerNet
www.cancer.net

CancerNet is the patient information website of the American Society of Clinical Oncology (ASCO). The website provides information about late effects of childhood cancers, videos, and links to more information.

Chai Lifeline/Camp Simcha
151 West 30th Street
New York, NY 10001
(212) 465-1300 or (877) CHAI LIFE
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, a respite program, negotiating insurance claims, financial aid, transportation, a kosher camp for children with cancer, and more.

Children’s Oncology Group’s (COG) Long-Term Follow-Up Guidelines
www.survivorshipguidelines.org

COG maintains and updates the comprehensive long-term follow-up guidelines that provide recommendations for screening and management of potential late effects of childhood cancer treatment. This document is available in a downloadable format (free) or in print format (for a charge). The website also has shorter “Health Links” about the different late effects; these are written for survivors.

CureSearch for Children’s Cancer
www.curesearch.org

CureSearch is a national nonprofit foundation that supports children’s cancer research and provides information and resources to all those affected by childhood cancer.

Ulman Cancer Fund for Young Adults (UCF)
6310 Stevens Forest Road, Ste. 210
Columbia, MD 21046
(800) 393-FUND (3863)
www.ulmanfund.org

A leading voice in the young adult cancer movement, the UCF supports, educates, connects, and empowers young adult cancer survivors. It raises awareness of young adult cancer issues and helps ensure all young survivors and their families have a voice and the resources necessary to thrive.

Family Voices
www.familyvoices.org

Family Voices helps families achieve family-centered care for all children and youth with special health care needs or disabilities. Especially helpful on its website is the state-by-state list of Family-to-Family Health Information Centers at www.familyvoices.org/page?id=0034 . These centers provide help with health care, insurance, and access to community services.

Institute of Medicine Report on Survivorship After Childhood Cancer
www.iom.edu/Reports/2003/Childhood-Cancer-Survivorship-Improving-Care-and-Quality-of-Life.aspx

The Institute of Medicine (IOM) released the report titled Childhood Cancer Survivorship: Improving Care and Quality of Life in 2003 . The report can be downloaded from the website for free or a printed copy is available for purchase. This lengthy report provides comprehensive coverage about all aspects of childhood cancer survivorship.

LIVESTRONG (formerly the Lance Armstrong Foundation)
2201 E. Sixth Street
Austin, TX 78702
(877) 236-8820
www.livestrong.org

LIVESTRONG funds research and provides support to individuals with cancer from diagnosis through survivorship, including a young adult alliance and a survivor empowerment initiative.

Leukemia & Lymphoma Society (LLS)
1311 Mamaroneck Avenue, Suite 310
White Plains, NY 10605
(914) 949-5213
www.lls.org/#/diseaseinformation/managingyourcancer/survivorship

LLS is the world’s largest voluntary health agency dedicated to blood cancers. It funds lifesaving cancer research around the world and provides free information and support services.

National Cancer Institute (NCI)
(800) 4-CANCER
www.cancer.gov

The NCI website provides information about all aspects of cancer, including survivorship issues. NCI also provides a nationwide telephone helpline for people with cancer, their families, friends, and the professionals who treat them, and sends out informational booklets about a variety of cancer-related topics.

NCI articles about late effects of childhood cancer are available online at the Web addresses listed below. These articles provide comprehensive information about the late effects that treatments for childhood cancer have on the different body systems. They also provide links to more information.

www.cancer.gov/cancertopics/pdq/treatment/lateeffects/patient

www.cancer.gov/cancertopics/pdq/treatment/lateeffects/healthprofessional

NCI’s Office of Cancer Survivorship (OCS) is on the Web at http://cancercontrol.cancer.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.

National Coalition for Cancer Survivorship
1010 Wayne Avenue, Suite 770
Silver Spring, MD 20910
(877) 622-7937 or (301) 650-9127
www.canceradvocacy.org

A nonprofit 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.

Patient Advocate Foundation
421 Butler Farm Road
Hampton, VA 23666
(800) 532-5274
www.patientadvocate.org

Provides help with insurance problems, publications, and referrals to attorneys.

Survivor Alert
www.survivoralert.org

Survivor Alert offers information about survivorship issues: who is at risk for late effects, how to get health insurance, how to get your medical records, and the importance of choosing a healthy lifestyle.

Amputation

Amputee Coalition of America (ACA)
900 East Hill Avenue, Suite 205
Knoxville, TN 37915-2566
(888) 267-5669 or TTY (865) 525-4512
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.

Disabled Sports USA
451 Hungerford Drive, Suite 100
Rockville, MD 20850
(301) 217-0960
www.dsusa.org

Disabled Sports USA provides opportunities for individuals with physical disabilities to gain confidence and dignity through participation in sports, recreation, and related educational programs.

Education and Employment

Cancer and Careers
www.cancerandcareers.org

Cancer and Careers is a nonprofit organization that empowers and educates cancer survivors as they return to work or search for new jobs.

The Disability Rights Education and Defense Fund
3075 Adeline Street, Suite 210
Berkeley, CA 94703
(510) 644-2555 (voice) or (510) 841-8645 (FAX, TTY)
www.dredf.org

This organization answers questions about the Americans with Disabilities Act and explains how to file a complaint.

Cancer Legal Resource Center
www.disabilityrightslegalcenter.org/about/about.cfm

The Cancer Legal Resource Center provides free information and resources about cancer-related legal issues to cancer survivors, caregivers, healthcare professionals, employers, and others coping with cancer. It is a national, joint program of the Disability Rights Legal Center and Loyola Law School Los Angeles.

HEATH Resource Center at the National Youth Transitions Center
The George Washington University Graduate School of Education and Human Development
2134 G Street NW, Suite 220
Washington, DC 20052-0001
[email protected]
www.heath.gwu.edu

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)
www.askjan.org

This consulting service provides free information about how employers can accommodate people with disabilities. It also provides information about the Americans with Disabilities Act and how people with disabilities can start their own small businesses.

Learning Disabilities Association of America
4156 Library Road
Pittsburgh, PA 15234-1349
(412) 341-1515
www.ldanatl.org

A national, nonprofit organization that advances the education and general welfare of children and adults with learning disabilities.

National Dissemination Center for Children with Disabilities
1825 Connecticut Avenue NW, Suite 700
Washington, DC 20009
(800) 695-0285 or (202) 884-8441
www.nichcy.org

A clearinghouse that provides pamphlets and information about disabilities and the rights of disabled children and their parents.

Parent Technical Assistance Center Network
www.parentcenternetwork.org

Lists Parent Training and Information (PTI) centers by state. These PTIs provide training and assistance to families of children with disabilities, including help with IEP and 504 plans.

Facial differences

Let’s Face It
University of Michigan
School of Dentistry/Dentistry Library
1011 North University
Ann Arbor, MI 48109-1078
www.dent.umich.edu/faceit

A national information and support group for people with facial differences.

Federal government agencies

Equal Employment Opportunity Commission (EEOC)
(800) 669-4000 or (800) 669-6820 (TTY)
www.eeoc.gov

The EEOC provides information about how to enforce rights under the Americans with Disabilities Act.

Department of Justice Civil Rights Division
Americans with Disabilities Act: ADA Home Page
(800) 514-0301 or (800) 514-0383 (TTY)
www.ada.gov

Specialists answer questions about Title I and Title II of the Americans with Disabilities Act.

National Women’s Health Information Center, U.S. Department of Health and Human Services
(800) 994-9662 or (888) 220-5446 (TDD)
www.womenshealth.gov/illnesses-disabilities

Resource center for the nation’s 10 million disabled women. Offers information about disabilities, laws, statistics, access to healthcare, financial assistance, abuse, parenting, sexuality, and links to advocacy groups.

Free (or low-cost) medications

NeedyMeds
P.O. Box 219
Gloucester, MA 01931
www.needymeds.org

NeedyMeds is a nonprofit organization that lists assistance programs to help uninsured or under-insured people obtain free or low-cost medications from patient assistance programs. Most medicines are provided by the pharmaceutical companies that manufacture them. This organization does not charge for its services.

Partnership for Prescription Assistance
(888) 477-2669
www.pparx.com

The Partnership for Prescription Assistance helps qualifying individuals without prescription drug coverage get the medications they need through the program that is right for them. Many people get their medications free or nearly free. This organization does not charge for its services.

RxAssist
www.rxassist.org

RxAssist is a Web-based medication assistance resource center that provides comprehensive, up-to-date information about patient assistance programs. It is part of the Center for Primary Care and Prevention at Memorial Hospital of Rhode Island.

Rx Outreach
P.O. Box 66536
St. Louis, MO 63166-6536
www.rxoutreach.org

Rx Outreach is a nonprofit charitable organization with the mission to provide affordable medications for people in need. It offers more than 400 different medications through its mail-order pharmacy to qualifying low-income individuals and families.

Genetics

Genetic Alliance
4301 Connecticut Avenue NW, Suite 404
Washington, DC 20008-2369
(202) 966-5557
www.geneticalliance.org

This nonprofit coalition of support groups, professionals, and consumers is 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.

www.GINAhelp.org

This website provides an introduction, and answers, to common questions about the Genetic Information Nondiscrimination Act and its protections in health insurance and employment. This online resource was created by the Genetic Alliance, the Genetics and Public Policy Center at the Johns Hopkins University, and the National Coalition for Health Professional Education in Genetics through funding by The Pew Charitable Trusts.

The National Human Genome Research Institute
www.genome.gov/10002328

The National Human Genome Research Institute provides information on its website about the Genetic Information Nondiscrimination Act of 2008.

The National Society of Genetic Counselors (NSGC)
401 North Michigan Avenue
Chicago, IL 60611
(312) 321-6834
www.nsgc.org

NSGC assists consumers in locating genetic counseling services.

Hair loss

Locks of Love
234 Southern Blvd.
West Palm Beach, FL 33405-2701
(888) 896-1588 or (561) 833-7962
www.locksoflove.org

A nonprofit organization that provides hairpieces to financially disadvantaged children under the age of 21 suffering from long-term medical hair loss. (It does not provide hairpieces for temporary hair loss due to chemotherapy and radiation.)

Hearing impairment

The American Academy of Audiology
11730 Plaza America Drive, Suite 300
Reston, VA 20190
www.howsyourhearing.org

The American Academy of Audiology, representing nearly 11,000 audiologists, is dedicated to providing quality hearing care services through professional development, education, research, and increased public awareness of hearing and balance disorders. The website provides extensive resources for families.

American Society for Deaf Children
800 Florida Avenue NE, #2047
Washington, DC 20002-3695
(800) 942-2732 (voice, TTY)
www.deafchildren.org

A national organization of families and professionals advocating for high-quality programs and services to help parents make sound and informed choices to meet their children’s needs.

Hearing Loss Association of America (HLAA)
7910 Woodmont Avenue, Suite 1200
Bethesda, MD 20814
(301) 657-2248 (voice, TTY)
www.shhh.org

HLAA helps people with hearing loss through information, education, advocacy, and support.

Hepatitis C/Liver

American Liver Foundation (ALF)
39 Broadway, Suite 2700
New York, NY 10006
(800) 465-4837 or (212) 668-1000
www.liverfoundation.org

ALF is a national, voluntary nonprofit health agency dedicated to preventing, treating, and curing hepatitis and all liver diseases through research, education, and support groups. Its helpline is available to answer questions about liver disease, including hepatitis.

Hepatitis Foundation International (HFI)
504 Blick Drive
Silver Spring, MD 20904-2901
(800) 891-0707 or (301) 622-4200
www.hepfi.org

HFI provides referrals to hepatologists (liver specialists) and gastroenterologists, as well as information about vaccinations, diagnosis, treatments, and caring for the liver. HFI also provides referrals to more than 400 support groups in North America.

Infertility

Fertile Hope
www.fertilehope.org

Fertile Hope provides support and information for cancer survivors at risk of infertility because of cancer treatments.

National Infertility Network Exchange
P.O. Box 204
East Meadow, NY 11554
(516) 794-5772
www.nine-infertility.org

A nonprofit organization that offers peer support for infertile couples, referrals to appropriate professionals, and educational materials.

The Organization of Parents Through Surrogacy
P.O. Box 611
Gurnee, IL 60031
(847) 782-0224
www.opts.com

Provides information about surrogate parenthood.

RESOLVE: The National Infertility Association
1760 Old Meadow Road, Suite 500
McLean, VA 22102
(703) 556-7172
www.resolve.org

RESOLVE’s mission is to provide timely, compassionate support and information to individuals who are experiencing infertility issues.

Osteonecrosis (also called avascular necrosis)

The National Osteonecrosis Foundation
5601 Loch Raven Blvd., Suite 201
Baltimore, MD 21239
(443) 444-5985
www.nonf.org

A nonprofit organization that provides funding for medical research and education of patients, physicians, and other health professionals.

The ON/AVN Support Group International Association, Inc.
7408 Henry Ave.
Philadelphia, PA 19128
www.avnsupport.org

An online support group for people with osteonecrosis (also called avascular necrosis).

Sexuality

The American Association of Sexuality Educators, Counselors, and Therapists
1444 I Street NW
Washington, DC 20005
(202) 449-1099
www.aasect.org

The AASECT directs individuals to certified sexuality educators, counselors, or therapists in their area.

Sjögren’s Syndrome

Sjögren’s Syndrome Foundation
6707 Democracy Blvd., Suite 325
Bethesda, MD 20817
(800) 475-6473 or (301) 530-4420
www.sjogrens.org

This foundation provides practical information and coping strategies about how to minimize the effects of dry eyes and mouth. In addition, the foundation is the clearinghouse for medical information about Sjögren’s syndrome.

Stem cell transplantation

Bone Marrow Transplant Information Network (BMT InfoNet)
www.bmtinfonet.org/after/top

BMT InfoNet provides support and information for patients and survivors of bone marrow, peripheral blood stem cell, and cord blood transplants. The section for survivors includes articles about medical, financial, emotional, educational, and practical issues. A resource directory of helpful organizations and agencies is included.

Center for International Blood and Marrow Transplant Research (CIBMTR)
www.cibmtr.org

CIBMTR leads research studies on transplants, collects data, and provides access to the data to researchers and patients. The website offers post-transplant guidelines, study summaries, and transplant and survival statistics. To access these resources, navigate to the Reference Center and then to Patient Resources.