Help for Kids with Cancer

guida di links, su varie risorse, curata ad inizio 2000 da Vincent Iannelli, M.D. su about.com

pediatrics.guide@about.com

•  
• CancerNet Information from NCI
• http://www.oncolink.com/
•  
• Childhood Cancer Web Resources
• http://www.ncl.ac.uk/~nchwww/guides/guide2.htm
•  
• National Library of Medicine
• http://www.nlm.nih.gov/
•  
• Oncolink: University of Pennsylvania Cancer Center
• http://www.oncolink.com/
•  
• Pediatric Oncology Branch of the National Cancer Institute
• http://cancernet.nci.nih.gov/pedpage/PedBrHome.html
•  
• A Starting Point for Internet Resources Related to Pediatric Neuro-oncology
• http://www.med.miami.edu/neurosurgery/start_intro.htm
•  

• Acoustic Neuroma Association
• PO Box 12402
• Atlanta, GA 30355
• (404) 237-8023
• http://www.anaausa.org
•  
• An order form for informational booklets, booklets re: diseases and treatments, a quarterly newsletter: Notes. Reprints from newsletter available.
•  
•  
• Acoustic Neuroma Association of Canada
• Box 369
• Edmonton, Alberta T5J 2J6
• Canada
• (403) 428-3384
• 1-800-561-2622
• The Connection, a quarterly newsletter and leaflets.
•  
•  
• American Bone Marrow Donor Registry
• Search Coordination Center
• Caitlin Raymond Int’l Registry
• University of Massachusetts Medical Center
• 55 Lake Avenue North
• Worcester, MA 01655
• (508) 756-6444
• fax (508) 752-1496
• http://www.tiac.net/users/crir
•  
• Resource for patients and physicians conducting a search for an unrelated bone marrow or cord blood donor.
•  
•  
• American Brain Tumor Association
• 2720 River Road
• Des Plaines, IL 60018
• (847) 827-9910
• 1-800-886-2282
• Fax ( 847) 827-9918
• http://www.abta.org/
•  
• A list of publications and services. Many booklets and pamphlets. A Primer of Brain Tumors, a dictionary, pamphlets re: types, treatments, coping. Connections – a penpal program. Physician resource lists. Alex’s Journey, a story for children. (Recommended for ages 9-13) Newsletter, Message Line, 3 issues a year.
•  
•  
• American Cancer Society
• 1599 Clifton Road NE
• Atlanta, GA 30329
• 1-888-227-5552
• Fax (404) 325-2217
• National Cancer Information Center 1-800-ACS-2345
• http://www.cancer.org/
•  
•  
• Booklets about Childhood Non-Hodgkin’s Lymphoma, Osteosarcoma. What Happened to You Happened to Me, a booklet by kids with cancer for kids with cancer. When your Brother or Sister has Cancer, a booklet for siblings.
•  
•  
• The Aplastic Anemia Foundation of America
• PO Box 613
• Annapolis, MD 21404--0613
• 1-800-747-2820
• Fax (410) 867-0240
• http://www.aplastic.org
•  
• Educational materials including books, pamphlets (a list and order form are available), a quarterly newsletter. Aplastic Anemia and Myelodysplastic Syndromes Answer Books (English and Spanish). Family, Parent and Teacher Coping Guides.
•  
•  
• Association of Pediatric Oncology Nurses
• 4700 W. Lake Avenue
• Glenview, IL 60025- 1485
• (847) 375-4724
• Fax (847) 375-4777
• http://www.apon.org
•  
• Guide to Educational Materials order form, Cancer Treatment Fact Sheets (also in Spanish) Journal and Newsletter. Patient/Family Education Resources catalog lists materials created and used by members in their care of children with cancer and their families.
•  
•  
• Blood & Marrow Transplant Newsletter
• 1985 Spruce Avenue
• Highland Park, IL 60035-2152
• (847) 831-1913
• Fax (847) 831-1943
• www.bmtnews.org
•  
• Produces a quarterly newsletter. A handbook: Bone Marrow Transplants – A Book of Basics for Patients.
• Has an attorney referral service and patient-to-survivor link service.
•  
• Brain Tumor Foundation of Canada
• 111 Waterloo Street Suite #210
• London, Ontario N6B 2M4
• (519) 642-7755
• Fax (519) 642-7192
• http://www.btfc.org/
•  
• Information Request Sheet lists publications that can be ordered. Brain Tumor Patient Resource Handbook, Adult and Pediatric versions in French and English. Brainstorm, a quarterly newsletter, and various pamphlets.
•  
•  
•  
• The Brain Tumor Society
• 84 Seattle Street
• Boston, MA 02134-1245
• (617) 783-0340
• 1 800-770-8287
• Fax (617) 783-9712
• http://www.tbts.org
•  
• Heads Up, a quarterly newsletter. Color Me Hope, a resource guide
•  
•  
• Bureau of Cancer
• Health Protection Branch / Health Canada
• Tunney’s Pasture
• Ottawa, Ontario
• K1 A OL2 / Canada
• 0602E2
•  
• This Battle Which I Must Fight/ Cancer in Canada’s Children and Teenagers, presents current information about this disease in Canada, including treatments and emotional impact.
•  
•  
• The Children’s Brain Tumor Foundation
• 274 Madison Avenue - Suite 1301
• New York, NY 10016
• (212) 448-9494
• Fax (212) 448-1022
• http://www.childrensneuronet.org
•  
• A Resource Guide For Parents of Children with Brain or Spinal Cord Tumors .Newsletter, The Challenge. Parent-to parent network.
•  
•  
• Canadian Cancer Society
• 565 W. 10th Avenue
• Vancouver, BC
• V5Z- 4 J4
• http://www.cancer.ca/

• Has a Program Services Resource List including videos and emotional support materials. Distributes handbooks adapted from NCI and American Cancer Society Publications. No Fears No Tears video that deals with painful procedures.
•  
•  
• Cancer Cured Kids
• PO Box 189
• Old Westbury, NJ 11568
• 1-888-995-KIDS
• Standing Together/ Standing Strong, a school reintegration video to teach about childhood cancer, treatments, side effects and impact on functioning and schooling.
•  
•  
• Cancer Information Service/ National Cancer Institute/ National Institutes of Health
• Building 31, Room 10A16
• 900 Rockville Pike
• Bethesda, MD 20892
• 1-800-4-CANCER
• http://cancernet.nci.nih.gov/pedpage/PedBrHome.html (NCI- Pediatric Oncology Branch)
• Numerous publications can be ordered by telephone. Publication catalogue available. Many other organizations distribute these booklets as part of their information packets.
•  
•  
• CANCERVIVE
• 6500 Wilshire Blvd. #500
• Los Angeles, CA 90048
• (310) 203-9232
• Coloring book in English and Spanish . Story and activity book for kids with cancer. A guide to assist teachers to facilitate a child’s re-entry to school after treatment.
•  
•  
• The Candlelighters Childhood Cancer Foundation
• 7910 Woodmont Avenue, Suite 460
• Bethesda, MD 20814-3015
• (301) 657-8401
• (800)366-2223
• Fax (301) 718-2686
• http://www.candlelighters.org
• e-mail info@candlelighters.org
• Know Before You Go is a comprehensive parents guide. Educating the Child with Cancer is a handbook for parents, educators and health professionals. The Candlelighters Guide to Bone Marrow Transplants in Children. Newsletter by and for parents and professionals. Youth newsletter also. Special articles and topics from past newsletters available. Recommended that you call for the complete list of publications including lists of books, and resources in English and Spanish.
•  
•  
• The Childhood Brain Tumor Foundation
• 2 0312 Watkins Meadow Drive
• Germantown, MD 20876
• (301) 540-8373
• http://www.mnsinc.com/cbtf
•  
• Newsletter.
•  
•  
• Childhood Leukemia Foundation
• 1608 Route 88 West Suite #203
• Brick, NJ 08724
•  
• They distribute free gift/toy baskets nationally, Toppers (a line of fun hats with detachable hair for girls receiving chemo), animal backpacks, and scholarship money for children to attend special camps run by local hospitals. A newsletter, Care 4 Kids.
•  
•  
• Children’s Hospice International
• 2202 Mt. Vernon Ave Suite 3C
• Alexandria, VA 22301
• 1-800-2-4-CHILD
• http://www.chionline.org
•  
• Coordinates support and referrals for seriously ill children and their families. Provides medical, technical and educational assistance to children families and professionals. Enhances quality of life as defined by that child/family. Publications List available. My Life/ Melinda’s Story, a storybook written by a seriously ill.
•  
•  
• Children’s Liver Disease Foundation
• AXA Equity & Law House
• 35-37 Great Charles Street Queensway
• Birmingham, B3 3JY
• England
• 0121 212 3839
• Fax 0121 212 4300
•  
• Many leaflets and fact sheets re: liver disease in children.
•  
•  
• Children’s Oncology Camping Association, International
• 1-800-737-2667
• http://www.COCA-intl.org
•  
• A list of camps for children with cancer and their siblings, sorted by state.
•  
•  
• The Compassionate Friends
• PO Box 3696
• Oak Brook, IL 60522-3696
• (630) 990-0010
• Fax (630) 990-0246
• Nationwide network of support for families who experience the loss of a child. Over 600 local chapters hold meetings, publish newsletters and info. Fact Sheet, leaflets re: grief and bereavement issues, resource catalogue. Quarterly national newsletter.
•  
• Cooley’s Anemia Foundation
• 26^th Avenue, Suite 203
• Flushing, NY 11354

• (718) 321-CURE
• 800-522-7222
• Fax (718) 321-3340
• http://www.thalassemia.org/
•  
• What is Cooley’s Anemia? a comprehensive book. Lifeline, a newsletter published twice yearly. Brochures, videos, pamphlets, booklets. A coloring book in English, Italian, Greek, Chinese. TAG is their official support group and produces a newsletter, TAG Newsletter.
•  
• Fanconi Anemia Research Fund, Inc.
• 1902 Jefferson Street
• Suite 2
• Eugene, Oregon 97405
• (541) 687-4658
• Fax 541-687-0548
• Family Outreach 1-800-828-4891
• Fact Sheet, a Handbook for Families & Their Physicians (English and Spanish), semi-annual Family Newsletter and Science Newsletter.
•  
•  
• Friend’s Network
• PO Box 4545
• Santa Barbara, CA 93140
• (805) 693-1017
• Publishes Funletter, an activity newsletter for kids and families living with cancer. Clinics and hospitals can order in bulk quantities or individual family order. Semi-annual Impact letter that encourages resource networking.
•  
•  
• Histiocytosis Association of America
• 302 North Broadway
• Pitman, NJ 08071
• 1-800-548-2758 (USA and Canada)
• (609) 589-6606 (other countries)
• Fax: (609) 589-6614
• http://www.histio.org/
•  
•  
• Publishes a quarterly newsletter and a parent network directory. Operates a 24 hour hotline for assistance, provides pamphlets and information on these rare diseases, and sponsors research.
•  
•  
• The HLA Registry Foundation
• 70 Grand Avenue
• River Edge, NJ 07661
• (201) 487-0883
• 1-800-336-3363
• Fax (201) 487-2456
•  
• Dedicated to recruiting voluntary Marrow Donors. They assist people in finding compatible, unrelated donors to provide marrow for transplant.
•  
•  
• Leukemia Society of America
• 600 Third Avenue
• New York, NY 10016
• (212) 573-8484
• Fax (212) 856-9686
• 1-800-955-4LSA Information Resource Center
• Numerous Publications re: leukemia, lymphoma, Hodgkins disease, and myeloma. Booklets explain the diseases, treatments and include a parent’s handbook: The Emotional Aspects of Childhood Leukemia.
•  
• Sam Fights Back, a coloring and activity book for children.
•  
•  
• Lymphoma Research Foundation of America
• 8800 Venice Blvd. Suite 207
• Los Angeles, CA 90034
• (310) 204-7040
• Fax 310-204-7043
• http://www.lymphoma.org/
•  
• Lymphoma Update, a quarterly newsletter. Provides up-to-date information on clinical trials and treatments.
•  
•  
• National Bone Marrow Transplant Link
• 29209 Northwestern Hwy #624
• Southfield, MI 48034
• 1-800-link-bmt
• Fax (248) 932-8483
• http://comnet.org/nbmtlink
•  
• Bone Marrow Transplant Resource Guide, Survivors Guide to a Bone Marrow Transplant
•  
•  
• National Brain Tumor Foundation
• 785 Market Street Suite 1600
• San Francisco, CA 94103
• 1-800-934-CURE
• http://www.braintumor.org
•  
• An order form is available. Search newsletter published four times a year. Booklets re: ideas and treatments including: Understanding and Coping With Your Child’s Brain Tumor, A Guide for Families,, Brain Tumors, A Guide. An order form for resources. Listing of support groups in US and Canada. Resource Directory.
•  
•  
• National Cancer Institute – NCI
• Bethesda, MD 20892
• http://cancernet.nci.nih.gov
• 1-800-4 CANCER is the Cancer Information Service
• http://rex.nci.nih.gov/
•  
• Numerous books re: cancer information in English and Spanish. So many that a Publication Catalogue is published.
• Federal Government Materials:
• Young People With Cancer/ A Handbook for Parents
• Talking With Your Child About Cancer
• When Someone in Your Family Has Cancer
• Managing Your Child’s Eating Problems During Cancer Treatment
• Bone Marrow Transplantation and Peripheral Blood Stem Cell Transplantation
•  
• PDQ the database with cancer information, research studies/clinical trials/treatments/and anti-cancer drugs use telephone number above.
• Health Professionals can use PDQ Search Service 1- 800-345-3300
• Fax 1-800-380-1375
•  
•  
• National Childhood Cancer Foundation
• 440 E. Huntington Drive
• PO Box 60012
• Arcadia, CA 91066-6012
• 1-800-458-6223
• (626) 447-1674
• Fax (626) 447-6359
• http://www.nccf.org/
•  
• Childhood Cancerline, newsletter. Their funding efforts support the Children’s Cancer Group network of pediatric cancer specialists.
•  
•  
• National Children’s Cancer Society
• 1015 Locust Street Suite 600
• St Louis, MO 63101
• 1-800-5FAMILY
• (314) 241-1600
• Financial aid and fundraising advice.
•  
•  
• National Marrow Donor Program
• 3433 Broadway Street NE
• Suite 500
• Minneapolis, MN 55413
• 1-800-526-7809
• http://www.marrow.org
•  
• Maintains a registry of volunteers willing to be marrow donors. Office of Patient Advocacy (1-888-999-6743). Has a materials request form Transplant Center Access Directory, which lists the transplant centers that participate in the NMDP. Patient Financial Guide to plan for transplant expenses. Frozen Fire, a storybook for children re: transplants. Various pamphlets and referrals to other national resources.
•  
•  
• The National Organization for Rare Disorders, Inc.
• PO Box 8923
• New Fairfield, CT 06812-8923
• (203) 746-6518
• Fax (203) 746-6481
• http://www.NORD%2DRDB.com/%7Eorphan
•  
• They maintain a "rare disease database" of information. Literature Order form, patient networking program, referral to information and local services.
•  
•  
• National Retinoblastoma Research and Support Foundation
• (NRRSF)
• 900 NW 17th Street, Room 257
• PO Box 016880
• Miami, FL 33101- 6880
• 1-800-226-2734
• Newsletter and patient information re: disease and treatment
•  
• National Transplant Assistance Fund
• 6 Bryn Mawr Avenue
• PO BOX 258
• Bryn Mawr, PA 19010
• 1-800-642-8399
• Assists with fundraising for transplants.
•  
• Neuroblastoma Children’s Cancer Society
• PO Box 957672
• Hoffman Estates, IL 60195-7672
• (847) 490-4240
• 1-800-532-5162
• Fax (847) 490-0705
• http://www.granitewebworks.com/nccs.htm
•  
• Newsletter, The Neuroblastoma Cancer Family Resource Guide is a comprehensive book which includes childhood cancer publications for families, no charge.
•  
•  
• The Neuroblastoma Society
• c/o Mrs. Ann Ward
• 41 Towncourt Crescent
• Petts Wood
• Kent BR 5 1 PH
• England
• Tel/Fax 01689 873338
• http://web.ukonline.co.uk/nsoc
•  
• A Booklet For Parents: that describes the disease, treatments, and effects. Newsletter published several times a year.
•  
•  
• New England Retinoblastoma Support Group/ NAPVI
• PO Box #317
• Watertown, MA 02272- 0317
• 1-800-562-6265
• Newsletter. Address c/o National Association for Parents of the Visually Impaired
• www.spedex.com/napvi
•  
•  
• Organ Transplant Fund
• 1102 Brookfield, Suite 202
• Memphis, Tn 38119
• 1-800-489-3863
• Assists those who need to raise funds for marrow transplants. Maintains accounts to which tax-deductible contributions can be made.
•  
• Sickle Cell Disease Association of America, Inc.
• 200 Corporate Pointe, Suite 495
• Culver City, CA 90230
• (800) 421-8453
• Many fact brochures in English and Spanish. A video, the Best Defense- Giving Penicillin to Children with Sickle Cell Disease. (English, Spanish and French Creole versions.) Fact sheets, educational and counseling materials.
•  
•  
• United Leukodystrophy Foundation
• 2304 Highland Drive
• Sycamore, IL 60178
• 800-728-5483
• http://www.ulf.org/ulf.html
•  
• A quarterly newsletter, ULF News. Resource Materials Order Form includes reprints, booklets and videotapes re: the disease and treatments.

Home Page Agor