World Wide Resources Patients and Families

World Wide Web Sites

Disclaimer: The following links are provided as a service to our users. This link does not imply endorsement or support of any programs or organizations. The Sickle Cell Information Center sponsors are not responsible for the content of the individual organization home pages. Click on a category below or scroll down:

Health Care Providers,  Patients and Families, Kid Friendly, Organizations, New Born Screening - Genetics, Teachers and Students, Bone Marrow Transplant, Cord Blood - Stem Cell, Incidence and distribution,  Pain Management, Stroke prevention - Transfusion, Other medical sites

Sickle Cell Web Sites for Patients and Families

Florida Partnership for Access to Sickle Cell Services (PASS) Program http://floridasickle.org/

University of Maryland Sickle Cell page http://www.umm.edu/blood/sickle.htm

CDC Sickle Cell Disease: 10 Things You Need to Know  http://www.cdc.gov/features/sicklecell/

Medline Plus Sickle Cell Anemia page at http://www.nlm.nih.gov/medlineplus/ency/article/000527.htm

Medline Plus Medication Information page at http://www.nlm.nih.gov/medlineplus/druginformation.html

The American Society for Blood and Marrow Transplantation is a national professional association that promotes advancement of the field of blood and bone marrow transplantation. ASBMT members are both in clinical practice and in
research.   http://www.asbmt.org/

The Wellness Web Parent Sickle Cell Information at http://www.wellnessweb.com/masterindex/sicklecell/about_sicklecell.htm - This site is well written summary for parents. It is great as a printed resource. 

New Hope for People with Sickle Cell Anemia- Publication No. (FDA) 98-1251 This is a great lay audience review about sickle cell and the new preventive treatment hydroxyurea or hydrea.

  Sickle Cell Advocates for Research and Empowerment (S. C.A. R.E. ) http://www.defiers.com/  In 1997 Deborah and Ivor Pannell formed Sickle  Cell Advocates for Research and Empowerment (S. C. A. R. E. ) whose primary  aim is to equip the sickle cell community with up-to-date information that  encourages advocacy and self-empowerment. The site includes everything from 
"Research News" to  to the personal experiences of "BloodSongs," as well as a comprehensive listing of links.

  DrSpock.com - Sickle Cell Articles for Parents co-authored by Dr. Lewis Hsu or the Sickle Cell Center on http://www.drspock.com/topic/0,1504,467,00.html

 Mayo Clinic - Health Oasis article on Sickle Cell Disease - This is an excellent article about sickle cell disease and a gateway to thousands of excellent health related articles on many subjects. (http://www.mayoclinic.com/invoke.cfm?id=DS00324)

  March of Dimes Sickle Cell Handout  in english and spanish 

  The Clinical Trials web site at http://clinicaltrials.gov/ct/gui - The U.S. National Institutes of Health, through its National Library of Medicine, has developed ClinicalTrials.gov to provide patients, family members and members of the public current information about clinical research studies. NIH Clinical Trials for Sickle Cell Currently ongoing at http://clinicaltrials.gov/ct/gui/c/b/action/FindCondition?ui=D000755&recruiting=true

  See NLM- Medline articles about sickle cell disease for the past 6 months - Read the medical articles published in the last 6 months about sickle cell disease, research results, and new treatments.

  Sickle Cell Anemia at Medic - Planet  http://www.medic-planet.com/MP_article/internal_reference/Sickle_cell_anemia

  Sickle Cell Disease Review - at http://scdreview.tripod.com/ a literature review, bibliography, and general information on the disease

  Prevnar the new pneumoccocal vaccine at http://www.prevnar.com/ The importance of early immunization. 

  Sickle Cell Disease at BlackHealthCare.com http://blackhealthcare.com/BHC/SickleCell/Description.asp

  Sickle Cell Anemia Information for Parents at The Nemours Foundation Kids Health for Parents web site at: http://kidshealth.org/parent/medical/heart/sickle_cell_anemia_p2.html

  The NIH MedLine Plus web links for sickle cell disease  lists the Sickle Cell Information Center and other great sites at: http://www.nlm.nih.gov/medlineplus/sicklecellanemia.html

 Hertz Nazaire's sickle cell patient run website - This is one of the best and most comprehensive patient run sites at http://members.tripod.com/nazaire1/

  Practical Tips for Preventing a Sickle Cell Crisis for parents and patients at http://www.aafp.org/afp/20000301/1363ph.html  

  Genes and Disease - Sickle Cell at http://www.ncbi.nlm.nih.gov/disease/sickle.html

 Sicke Cell - University of Pittsburgh Graduate School of Public Health  at http://www.pitt.edu/~mahst51/ a good summary

  Sickle Cell Disease What is sickle cell disease? at http://www.aafp.org/afp/20000901/1027ph.html

  The National Maternal and Child Health Clearinghouse (NMCHC) at http://www.nmchc.org/ has the following titles:

A Parents' Handbook for Sickle Cell Disease, Part II: Six to Eighteen Years of Age (1994, 80 pp.) H033
Koneksyon Familial: Tras Selil Falsifòm (Family Connection: Sickle Cell Trait)—in Haitian Creole (1993, 4 pp.) G055
Newborn Screening for Sickle Cell Disease and Other Hemoglobinopathies (1987, 8 pp.) F023
Parents' Handbook for Sickle Cell Disease, Part I: Birth to Six Years of Age (A) (1998 Revision) (1998, 114 pp.) F060

  Pharmaceutical Company Web Links - This page is a listing of pharmaceutical companies with products helpful to sickle cell patients

  RxAssist at http://www.rxassist.org/ provides health care providers with information on accessing more than 100 pharmaceutical manufacturers' patient assistance programs. These programs usually offer a limited supply of free prescription medication to eligible patients.

  Volunteers in Health Care - Help with Medication and medical services at http://www.volunteersinhealthcare.org/home.htm

  University of Rochester Hemoglobinopathies Brochures and Fact Sheets at http://www.urmc.rochester.edu/genetics/hemo.htm -This site has wonderful patient handouts on all of the common hemoglobinopaties and traits. This is a great resource for those involved with newborn screening and genetic counseling

  Donating Blood for Sickle Cell Patients - This is an excellent write up about all of the good reasons to donate blood for sickle cell patients.

  WebMD Sickle Cell Information This article from the editors of Harvard Medical School's Well Connected is an excellent review of Sickle Cell Disease and the current research.at http://my.webmd.com/topic_summary_article/DMK_ARTICLE_40076

  AMA Fact sheet about sickle cell disease at http://www.ama-assn.org/insight/spec_con/patient/pat051.htm

Starbright releases the educational Sickle Cell CD -ROM - he Sickle Cell Slime-O-Rama Game is an interactive "quiz show" where players are challenged to answer questions about sickle cell disease and learn fundamental principles about disease management and adherence. The goal of the game is to provide children and teens with basic skills about communicating pain to adults, coping with a pain episode, and preventing more severe pain episodes. Designed for ages 6 to 14. Other resources on the CD include Blood Tests: Exploring Our Incredible Blood Targeted toward teens and pre-teens ages 10 to 15, Spotlight on IVs, and Medical Imaging: Welcome to the Radiology Center STARBRIGHT's "Virtual Radiology Tour" go to STARBRIGHT's web site at http://www.starbright.org/projects/hes/index.html

  Sickle cell Advocate of the North Shore at http://www.Sickle-Cell-Info-Page.org/index.html - Salem- Felicia Moore-Egbe, R.N., a nurse at both Salem and Union hospitals, has formed Sickle Cell Advocates of the North Shore, a group dedicated to increasing sickle cell disease awareness, providing referrals and establishing a support group for people and their families stricken with the disease. The site is dedicated to her daughter, Janet

  Sickle Cell Disease Association of the Piedmont (SCDAP) http://www.scdap.org/ a good site for information and services for sickle cell patients in the Greensboro, North Carolina area

  USA Today Sports  - Terrell Owens makes big play against sickle cell By Mike Falcon, Spotlight Health With medical adviser Stephen A. Shoop, M.D. 
http://www.usatoday.com/news/health/spotlight/2001-09-07-owens-sickle-cell.htm a focus on sickle cell trait in athletes and sickle cell disease

  Childrens Health Care of Atlanta  - CHOA Website for Sickle Cell at http://www.choa.org/hemonc/sickle.shtml - Atlanta Support, clinical care, and patient stories.

  Gene therapy http://www.ornl.gov/hgmis/medicine/genetherapy.html

  Human Genome project at http://www.ornl.gov/hgmis/project/info.html

  CDC-Genetic Diseases - Sickle Cell Page - An excellent review of the chromosomal aspects of sickle cell, the US prevalence by state, and complication rates ( for high school Level)  at:  http://www.cdc.gov/genomics/hugenet/reviews/sickle.htm

  All about Blood at http://sln.fi.edu/biosci/blood/blood.html

  Blood facts at http://www.bloodbook.com/facts.html

  TLC's T-Boz targets sickle cell disease at http://www.usatoday.com/life/health/doctor/lhdoc233.htm

  Sickle Cell Disease at http://www.bio.metu.edu.tr/~e072190/sickle.html

  University of Pitsburg Sickle Cell History and Characteristics at http://www.pitt.edu/~mahst51/

  Sickle Cell Tutorial - for students teachers, an  patients. This page kindly sponsored by a grant from the NIH Science Education Partnership Award (SEPA) Program.  http://k14education.uams.edu/SickleCell/about.html

  Caring for a child with sickle cell disease. http://www.ucdmc.ucdavis.edu/health_tip/cfacwscd.html

  Your Genes, Your Health. http://www.yourgenesyourhealth.org/  The module uses animations and video to explain the genetics, inheritance, mechanics and other aspects of sickle cell. This is a free resource developed by the Dolan DNA Learning Center as part of a grant funded project

  Anemia.com at http://www.anemia.com/ The many causes of anemia and treatments for those causes.

  Pediatric Pain Source book at http://www.dal.ca/~painsrc/ An excellent resource for pain assessment tools

  New Genetics course on CD-ROM at http://www.twistedladdermedia.com/  This has a section about sickle cell disease and all of the clinically relevant genetic diseases. The New Genetics™: Medicine and the Human Genome is a multimedia CD-ROM for those interested in the impact of genetics and genomics on healthcare and society. The New Genetics™: Courseware for Physicians is a CD-ROM for physicians who wish to update their knowledge of genetics and genomics. CME credits are available through Stanford University.

  The Cochrane Evidence based medicine site at http://www.cochrane.org/

  TASC, the Unit for the Social Study of Thalassaemia and Sickle Cell based in Leicester in the United Kingdom.at  http://www.tascunit.com/

  History of Sickle Cell Discovery: Sickle Cell Research for Treatment and Cure commemorates the 30th anniversary of
the the National Sickle Cell Anemia Control Act (P. L. 92-294). This is a historical look at sickle cell disease research and treatment up until the present moment. It is excellent for both patients, family members and health care providers. It is in Adobe format for download. http://www.nhlbi.nih.gov/resources/docs/scd30/index.htm 

  National Library of Medicine MedLine Plus - Sickle Cell Anemia at http://www.nlm.nih.gov/medlineplus/sicklecellanemia.html This is a wonderful resouce page with links to patient friendly information 

  The U.S. Department of Energy Biological and Environmental Research program Genetic Disease Profile: Sickle Cell Anemia (Dept. of Energy, Human Genome Project) This has a history of the discovery and an excellent review at http://www.ornl.gov/hgmis/posters/chromosome/sca.html

  Myriad of New Therapies Available for Sickle Cell Disease  at http://www.ama-assn.org/ama/pub/article/4197-6324.html

  Sickle Cell Disease in Children a information sheet from the Family Doctor: http://familydoctor.org/handouts/621.html

  New Sickle Cell patient Flash video tutorial available at http://www.stoppain.org/multimedia/index.html#

  About Sickle Cell Disease http://www.sicklecellinfo.net/

  Mayo Clinic Sickle Cell Overview at http://www.mayoclinic.com/invoke.cfm?id=DS00324

New Web-Based Resource: About Herbs, Botanicals & Other Products from Memorial Sloan-Kettering Cancer Center. Information on this site explains the effects, side effects, drug interactions, and other details of each product listed as well as
links to scientific research  www.mskcc.org/aboutherbs

United Way Atlanta at http://www.unitedwayatl.org/

10 things to know when evaluating medical web sites

SICKLE CELL PAIN RELIEF RECORD from St. Francis Hospital and Medical Center The Center for Children's Health and Development, Hartford, CT Developed by: Saint Francis Hospital and Medical Center/ UCONN-Saint Francis Sickle Cell Services. This is a printable booklet for patients to complete with their doctor and carry with them. http://www.cityofhope.org/prc/html/sickle_cell_pain_relief_record.htm

Congressional Black Caucus Foundation Heath web site at www.cbcfhealth.org provides the information you need, when you need it from people you trust." Our mission is to empower people of African descent to make better decisions about their health and that of their community. www.cbcfhealth.org provides factual information about public health issues that directly and indirectly this target population. Sickle Cell articles are at :
 http://www.cbcfhealth.org/content/contentID/1017 and http://www.cbcfhealth.org/content/contentID/1018

Community Sickle Cell Support Group web-site http://www.cscsginc.org/

A Parents Guide to Cord Blood Transplants at www.aparentsguidecordblood.com

The History of Sickle Cell Disease http://www.innvista.com/health/ailments/anemias/sickhist.htm

http://www.ecu.edu/medhum/newsletter/fall1998_p2.htm

https://www.bloodmed.com/home/hannpdf/bjh2557.pdf

American Academy of Family Physicians  - Sickle Cell Disease: Practical Tips for Preventing a Sickle Cell Crisis http://familydoctor.org/x2110.xml

Healthwise - What is Sickle Cell - http://www.peacehealth.org/kbase/topic/major/hw254173/descrip.htm

Caterpillars to Butterflies - Caterpillars to Butterflies, Incorporated serves to support the quality of life of children with sickle cell disease who are afflicted with physical and mental challenges, and to support and enhance the lives of these children’s families who are facing physical, emotional, mental and spiritual obstacles due to the child’s medical challenges. http://www.caterpillarstobutterflies.org/

Partners in Education http://www.partnersinpolicymaking.com/education is a six-hour, self-directed e-learning course to help parents with children with developmental disabilities better understand and maximize the benefits of special education services and inclusion for their children, is now available. 

ExcessIron.com - Introduction to Iron Overload http://www.excessiron.com

Ask About Iron - Sickle Cell Disease http://www.askaboutiron.com/info/sickle_cell/iron_overload.jsp

Health Power for Minorities   www.healthpowerforminorities.org -  Health Power's mission is improving the health 
of multicultural populations by providing user-friendly, culturally   relevant health information for disease prevention, early detection 
 and control.

IronToxicty.com  http://www.irontoxicity.com - Introduction to Iron Overload  This site explores the causes, consequences, diagnosis, and management of iron overload, a disorder which, left untreated, causes toxicities that often lead to serious health problems or premature death.

Gene Tests - Sickle Cell Disease http://www.genereviews.org/servlet/access?db=geneclinics&site=gt&id=8888891&key=Y8gpMkO6V-ea3&gry=&fcn=y&fw=t7xT&filename=/profiles/sickle/index.html

A comprehensive genetic and clinical review article

ICD-9 Code book online - These are the codes hospitals and clinics need to bill insurance plans properly http://icd9.chrisendres.com/index.php?action=child&recordid=2053

Sickle-cell disease - From Wikipedia, the free encyclopedia http://en.wikipedia.org/wiki/Sickle_cell_anemia

Sickle Cell Anemia Research today at http://sicklecellanemia.researchtoday.net/ 

New sickle cell  web based teaching module on  pain management at the Children's Hospital of Pittsburgh  http://www.chp.edu/centers/03_hema_sickle.php

Washington University tutorial on sickle cell disease at  http://www.nslc.wustl.edu/sicklecell/sicklecell.html

Sickle Cell Anemia Research Today at http://sicklecellanemia.researchtoday.net/about-sicklecellanemia.htm

A recommitment to sickle cell disease research - The NIH agenda full text at http://bloodjournal.hematologylibrary.org/cgi/content/full/111/10/4852

Patient Advocate Foundation at http://www.patientadvocate.org/

A New and Improved HealthFinder.gov web site at http://beta.healthfinder.gov 

New Pain Advocacy Resource at www.inthefaceofpain.com

Stanford Lucile Packard Children's Hospital Sickle Cell Page http://www.lpch.org/DiseaseHealthInfo/HealthLibrary/hematology/sicklcel.html

New Jersey Dept of Health Sickle Cell Page http://www.nj.gov/health/fhs/sicklecell/school/whatis.shtml

Sickle Cell Slime-O-Rama is an interactive online game for children with sickle cell disease that teaches pain management and prevention
strategies, and provide tips for communicating to adults about pain. http://www.starlight.org/sicklecell

Take the Sickle Cell Knowledge Quiz online - The CDC has posted an online sickle cell disease knowledge test with feed back at http://www.cdc.gov/ncbddd/sicklecell/quiz/

Genetics of Sickle Cell Disease http://learn.genetics.utah.edu/content/disorders/whataregd/sicklecell/

FACE Foundation at http://www.facefoundationinc.org/ The mission of the FACE of the Sickle Cell Community is to coordinate a coalition between national and local community organizations, medical educational institutions and professionals, and our influential African American community, in the interest of promoting a more effective means of communication, alternative treatments, resources, research for a cure, and increasing awareness, thereby bringing the FACE of Sickle Cell to the forefront of representation in main-stream media.

Sickle Cell Disease - The Guardian - http://www.guardian.co.uk/lifeandstyle/besttreatments/sickle-cell-disease-description

Sickle Cell Enigma Consultants - http://www.sicklecell-ec.org/index.html

Sickle Cell Art and Awareness http://www.sicklecellart.com/

Virginia Sickle Cell Awareness Program http://www.vahealth.org/sicklecell/

Sickle Cell Patient Education Page - Sickle Vasculopathy from JAMA as a PDF also at  http://jama.ama-assn.org/cgi/content/full/300/22/2690

 

 

Kid Friendly Sites

Planet Sickle - A kids site hosted by the Sickle Cell Society in the UK at http://www.sicklecellsociety.org/sicklescene/pshome.htm

www.SicklecellKids.org is up and running - This demonstration of the new Web site for sickle cell education and inspiration is up for viewing. The full story of the author and design is at: New Sickle Cell Web site for Kids is in Development

Starbright Foundation - for children and teens There are wonderful resources for sickle cell kids.

Send mail to aplatt@emory.edu with questions or comments about this web site.
Copyright © 1997 Sickle Cell Information Center
Last modified: April 22, 2009