North America

United States

American Sickle Cell Anemia Association
P.O. Box 1971
10300 Carnegie Avenue
Cleveland, OH 44106
216-229-8600
216-229-4500 fax
www.ascaa.org

The Sickle Cell Disease Association of America
The goal of the Sickle Cell Disease Association of America (SCDAA) is “to find a cure and improve the quality of life for those who are afflicted and their families.” The SCDAA publishes and distributes to parents and teachers educational materials for living and coping with sickle cell disease. Through its member organizations, SCDAA provides such services as screening and referrals, counseling, home nursing care, research updates, psychosocial services, transportation, summer camp, local and regional workshops, international symposia, as well as a sickle cell chat room. The SCDAA also provides guidelines for starting local sickle cell groups.
Sickle Cell Disease Association of America
231 East Baltimore Street
Suite 800
Baltimore, MD 21202
800-421-8453
410-528-1555
410-528-1495 fax
www.sicklecelldisease.org
scdaa@sicklecelldisease.org

The American Society of Hematology
This is the national organization supporting hematologists (blood experts). They support sickle cell research, publications, and professional education. They have an annual meeting at which many sickle cell research results are presented.
American Society of Hematology
2021 L Street NW
Suite 900
Washington, DC 20036
202-776-0544
202-776-0545 fax
www.hematology.org

The Alliance of Genetic Support Groups
This nonprofit health-advocacy organization is committed to transforming health through genetics.
The Alliance of Genetic Support Groups
430l Connecticut Avenue NW
Suite 404
Washington, DC 20008
800-336-4363
202-966-5557
202-966-8553 fax
www.geneticalliance.org
info@geneticalliance.org

National Heart, Lung, and Blood Institute (NHLB)
The NHLB is a part of the federal government’s National Institutes of Health, focused on research, training, and education programs to promote the prevention and treatment of heart, lung, and blood diseases. New 2014 NIH evidence based sickle cell guidelines are published here.
Sickle Cell Disease Scientific Research Group
6701 Rockledge Drive, MSC 7950
Bethesda, MD 20892
301-435-0055
301-480-0868 fax
www.nhlbi.nih.gov

Raremark—Sickle Cell useful resources
Raremark provides recent news, important research, and the shared experience of the sickle cell community.
US office:
Raremark
Cambridge Innovation Center
245 Main St
Cambridge, MA 02142
+1 (617) 500-4823
https://raremark.com/sickle-cell-disease

St. Jude Children’s Research Hospital—Sickle Cell program
St. Jude’s provides comprehensive treatment, conducts research, and provides clinical trials in its sickle cell program.
St. Jude Children’s Research Hospital
262 Danny Thomas Place
Memphis, TN 38105
901-595-3300
https://www.stjude.org/treatment/disease/sickle-cell-disease.html

The American Pain Society
This organization has published “The Guideline for the Management of Acute and Chronic Pain in Sickle-Cell Disease” and has many pain-management resources. The “Guideline” is an excellent handbook focusing on pain assessment and treatment. The review is evidence based and peer reviewed by many experts in sickle cell disease.
The American Pain Society
4700 W. Lake Avenue
Glenview, IL 60025
847-375 4715
847-375-6315 fax
www.ampainsoc.org
info@ampainsoc.org

Globin Gene Server
This site provides data and tools for studying the function of DNA sequences, with an emphasis on those involved in the production of hemoglobin. There is an online copy of A Syllabus of Human Hemoglobin Variants (1996) and most of A Syllabus of Thalassemia Mutations (1997).
http://globin.cse.psu.edu

Centers for Disease Control (CDC) Sickle Cell Information Web Page
This site has sickle cell information on incidence and prevention of complications.
Centers for Disease Control
1600 Clifton Road
Atlanta, GA 30333
800-232-4636
http://www.cdc.gov/ncbddd/sicklecell/index.html

Canada

Sickle Cell Disease Association of Canada

South America

Guyana

Guyana Sickle Cell Association
Linden R Swan, President of Guyana Sickle Cell Association
Guyana Sickle Cell Association PO. box 101234, Georgetown, Guyana.
Hospital: Davis Memorial Hospital in Georgetown, Guyana
Email: linrswan@hotmail.com

Brazil

Hematology Service of Laboratório Lamina in Rio de Janeiro
Dr Heloisa H.A. Gallo da Rocha
Assocíação de Falcemicos do Rio de Janeiro
Email: heloisag@ism.com.br

Dr. Célia Maria Silva, Pediatric Hematologist
Fundação Hemominas Rua Domingos Vieira
Address: 319 segundo andar, Belo Horizonte, Minas Gerais Brazil 30.150-240
Phone: (5531) 32484490/92
Fax: (5531) 32416415
Email: celmar@gold.com.br

Carribean

Jamaica

Sickle Cell Foundation of Jamaica

Africa

Nigeria

Sickle Cell Foundation Nigeria

Ghana

Sickle Cell Anemia Foundation Ghana

Sierra Leone

Coulson Sickle Cell Association

Europe

United Kingdom

Sickle Cell Society

Germany

Dr. Roswitha Dickerhoff, MD
Johanniter Kinderklinik 53754 St. Augustin, Germany
Phone: +49-2241-2491
Fax +49-2241-249272
Email: R.Dickerhoff@uni-bonn.de

Asia

India

Dr. Jyotishkumar Ashokbhai Patel, Chief consultant & Shishudeep Children’s Hospital Director
Shishudeep Children’s Hospital
Bardoli, Gujarat, India Zip 394572
Email: shishudeep@satyam.net.in