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Online Books and Resources for Patients and Families

Recommended  Books,  Monographs,  Brochures, and Presentations


What is Sickle Cell Disease and Trait

Click here for this one page handout is available for printing and distribution. Download a 1 page fact sheet to print and use


Problem Oriented Management of Sickle Cell Syndromes

A problem oriented SOAP note formatted guidebook for healthcare providers by James Eckman, M.D. and Allan Platt, PA-C ,published in 1991using grant support from the Genetic Services Branch of the Maternal and Child Health Bureau, U.S. Department of Health and Human Services (Grant MJC-131003-04), The Southeastern Regional Genetics Group (Grant MCJ 131002-08) and a legislative grant from the State of Georgia Department of Human Resources (DHR Contract 427-93-10593)

Available online only, Please Click Here



Sickle Cell Disease In Children And Adolescents: Diagnosis, Guidelines For Comprehensive Care, And Care Paths And Protocols For Management Of Acute And Chronic Complications

Peter A. Lane, George R. Buchanan, John J. Hutter, Robert F. Austin, Howard A. Britton, Zora R. Rogers, James R. Eckman, Michael R. DeBaun, Winfred C. Wang, Prasad Mathew, Sarah Iden, Michael Recht, Jesse D. Cohen, Ernest Frugé, Leanne Embry, Lewis Hsu, Brigitta U. Mueller, Robert Goldsby, Charles T. Quinn, Marie Mann, and Michele A. Lloyd-Puryear for the Sickle Cell Disease Care Consortium

Revised at the Annual Meeting of the Sickle Cell Disease Care Consortium, Sedona, AZ, November 10-12, 2001

Supported in part by the Mountain States Genetics Network, by the Texas Genetics Network and Texas Newborn Screening Hemoglobinopathy Grant (Texas Department of Health), and by Project #5H46 MC00132 and a contract from the Maternal and Child Health Bureau (Title V Social Security Act), Health Resources and Services Administration, Department of Health and Human Services.

Palm -PDA version for download

I only cry at night 2011

I Only Cry At Night

P. Allen Jones, I Only Cry At Night, 2011.

ISBN-13: 978-1463573645  

This is a personal story about overcoming many obstacles including sickle cell disease. P. Allen struggled out of poverty to a federal executive career despite living in pain. This book is an inspiration to anyone, especially those suffering with sickle cell disease.


Available at:

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Amazon available paperback & kindle

Barnes & Noble paperback

Also available in select bookstores

Author contact http://www.pallenjones.com/


The Child with Sickle Cell Disease A Teaching Manual

Written and Developed by Debra A. Vedro, MSN, RN, CPNP And Rebecca A. Morrison, MSN, RN, CPNPat the  Children's Medical Center of Dallas, Dallas, Texas Illustrated by Mary Ann Zaplac, MA In Coordination with The Texas Department of Health This book my be downloaded and printed as a hand out. Click here to download a Word document to print


A Counseling Handbook for Sickle Cell and Other Hemoglobinopathies from The Virginia Sickle Cell Awareness Program  http://www.vahealth.org/sicklecell/pubssc.htm

These are wonderful resources for parents and health care providers:
A complete guide for counseling and education for the most common hemoglobin variants identified through Virginia’s sickle cell screening program. PDF File



Sickle Cell Guide from Brazil

Online Guidebook for health care providers and patients about Sickle Cell Disease in Portuguese by Dr.Heloisa Helena Arantes Gallo da Rocha  a Hematologist in Brazil: Professional Guide and Patient Guide


Sickle Cell Disease: Information For School Personnel

A free  online book for school nurses, teachers and counselors from the New Jersey Department of Health & Senior Services Division of Family Services Special Child, Adult and Early Intervention Services at http://www.state.nj.us/health/fhs/sicklecell/index.html for a free copy  contact:

Special Child, Adult and Early Intervention Services
New Jersey Department of Health and Senior Services
P.O. Box 364
Trenton, New Jersey, 08625-0364 

(609) 984-1343
Fax (609) 292-3580


Keisha’s Transfusions and
Desferal™ Therapy - An Educational Coloring Book for Children with Sickle Cell Disease By Donna Dent and Beatrice Gee, MD

.Transfusion and Chelation Therapy Coloring Book

Download a version without color to print and use as a coloring book


Bobby Blood Cell - An adventure in preventing sickle cell problems


Bobby Blood Cell - Coloring Book

Bobby Blood Cell - Power Point Presentation

By Donna Dent


Link to the Globin Gene Server

A database of hemoglobin variants - This is an online version of the classic textbook of hemoglobin variants written by Dr. Heiusman.


University of Rochester Hemoglobinopathies Brochures and Fact Sheets
  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


Pain assessment and pain management in sickle cell disease - A guide for patients and their families

From the staff of the

Georgia Comprehensive

Sickle Cell Center at

Grady Health System

Click Here


New 2002 - NIH Management and  of Sickle Cell Disease Fourth Edition - Now available online by clicking here or the entire 188 page book as a Adobe pdf download at http://www.nhlbi.nih.gov/health/prof/blood/sickle/index.htm

The latest guidelines from the Nation's top Sickle Cell Experts

Palm -PDA version for download



Power Point Tutorial about Sickle Cell Disease

wmv Sickle Cell Video

pdf Sickle Cell and Nutrition ( ppt PowerPoint )

pdf Sickle Cell Tutorial - Introduction ( ppt PowerPoint )

pdf Sickle Cell Tutorial - Normal Blood Cells ( ppt PowerPoint )

pdf Sickle Cell Tutorial - Sickle Cells ( ppt PowerPoint, zip15pxZip Archive of PowerPoint )

pdf Sickle Cell Tutorial - Healthy Livingppt PowerPoint, zip15pxZip Archive of PowerPoint )

pdf Sickle Cell Tutorial - Research ( ppt PowerPoint )





Guidelines for Standard of Care of 
Acute Painful Episodes in Patients with 
Sickle Cell Disease

Developed by: 
Samir K. Ballas, MD (1)  Timothy M. Carlos, MD (2) Carlton Dampier, MD (3) and the Guidelines Committee Commonwealth of Pennsylvania

Department of Health


Guidelines For The Treatment Of People

With Sickle Cell Disease



Click here to download the guidelines in RTF - Word format

Click here to download the tables and pathways in power point format:

Part 1 vertical slides

Part 2 horizontal slides


Written by members of SCAC (The Sickle Cell Advisory Committee),  Genes (The Genetic Network Of New York, Puerto Rico and the Virgin Islands) with the support from grants from HRSA

All Information Contained In This Volume Is Available For Reproduction. Please Cite Source.

For More Information:

Katharine B. Harris, M.B.A.
Wadsworth Center, Room E-297
P.O. Box 509, Albany, Ny 12201
(518) 474-7148
This e-mail address is being protected from spambots. You need JavaScript enabled to view it

Genes – The Genetic Network Of New York, Puerto Rico And The Virgin Islands

SCAC – The Sickle Cell Advisory Committee Of Genes

HRSA – U.S. Health Resources And Services Administration March 2002


Critical Elements of Care on Sickle Cell a 43 page pediatric care guidebook from the Center for Children with Special Needs Children's Hospital and Regional Medical Center Seattle, WA.   Adobe PDF version  http://www.cshcn.org/forms/SickleCell_5-03.pdf

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.

Sickle Cell research Update - An excellent review of therapy options in sickle cell disease from American Society of Hematology ASH.

“Sickle Cell Disease: A Short Guide to Management,” chapter 13 from the European School of Haematology - Club du Globule Rouge et du Fer Handbook on Disorders of Iron Homeostasis, Erythrocytes and Erythropoiesis (2006), is reprinted here with permission. We wish to acknowledge and thank the ESH; handbook editors Carole Beaumont, Photis Béris, Yves Beuzard, and Carlo Brugnara; chapter 13 author Frédéric Galactéros; and Novartis Oncology, Vifor International, and Amgen Inc, which have provided educational grants in support of this handbook.
available in PDF format at  http://www.ironcurriculum.esh.org/Activity/1819_03/1819_03_chapter13.pdf

Several other chapters  in this free on-line course at  http://www.ironcurriculum.esh.org/

New  Sickle Cell and Stroke Education Booklet from the UK

Sickle Cell & Young Stroke Survivors (SCYSS)  Has produced a booklet in PDF format for downloading and printing
Click here for the PDF download Sickle Cell and Stroke from founder and CEO Carol Nwosu www.scyss.org General e-mail: This e-mail address is being protected from spambots. You need JavaScript enabled to view it
Last Updated on Friday, 14 September 2012 14:36
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