Recommended Blood Disorder Websites for Patients & Families
About Bleeding disorders:
Canadian Hemophilia Society - http://www.hemophilia.ca/en/bleeding-disorders/
The Canadian Hemophilia Society is committed to improve the health and quality of life of all people with inherited bleeding disorders and ultimately to find a cure. The Canadian Hemophilia Society provides information, programs and services to people with hemophilia, von Willebrand disease, rare factor deficiencies and inherited platelet disorders, their families and friends, health care providers, others within the patient community such as teachers, day care workers, and employers.
World Federation of Hemophilia - http://www.wfh.org/en/page.aspx?pid=492
The World Federation of Hemophilia (WFH) has provided global leadership to improve and sustain care for people with inherited bleeding disorders, including hemophilia, von Willebrand disease, rare factor deficiencies, and inherited platelet disorders. In particular they have a substantial information section on bleeding disorders for patients and families.
National Institutes of Health (NIH) National Heart, Lung and Blood Institute - http://www.nhlbi.nih.gov/health/health-topics/topics/sca
This site has an excellent overview of sickle cell disease for patients and families: what it is, cause, signs and symptoms, diagnosis, treatments and management. It includes patient testimonials of living with sickle cell disease. In addition there is a component for health professionals which directs the user to free downloadable resources about sickle cell, as well as Von Willebrand’s disease. http://www.nhlbi.nih.gov/health-pro/resources/blood
National Institutes of Health (NIH) National Heart, Lung and Blood Institute - http://www.nhlbi.nih.gov/health/health-topics/topics/sca
This site has an excellent overview of sickle cell disease for patients and families: what it is, cause, signs and symptoms, diagnosis, treatments and management. It includes patient testimonials of living with sickle cell disease. In addition there is a component for health professionals which directs the user to free downloadable resources about sickle cell, as well as Von Willebrand’s disease. http://www.nhlbi.nih.gov/health-pro/resources/blood
Centers for disease Control and Prevention - http://www.cdc.gov/ncbddd/sicklecell/index.html
This website focuses on protecting people who are especially vulnerable to health risks - babies, children, people with blood disorders, and people with disabilities. It offers a thorough resource for individuals/families and health professionals regarding sickle cell disease and sickle cell trait. In addition it provides access to many downloadable resources.
Dolan DNA Learning Center - http://labcenter.dnalc.org/feature/sickleCell-H.html
The mission of the DNA Learning Center is to help children/adolescents and their families understand genetics. The above URL displays a short video on sickle cell disease. As well there is a facts page about Sickle cell disease. http://www.yourgenesyourhealth.org/sickle/whatisit.htm
Sickle Cell Disease Association of America - http://www.sicklecelldisease.org/
The mission and vision of SCDAA is to advocate for and enhance the quality of health, life and services for individuals, families and communities affected by sickle cell disease and related conditions, while promoting the search for a cure for all people in the world with sickle cell disease. SCDAA engages in community outreach and program efforts throughout the United States and Canada. These efforts may include but are not limited to: educational campaigns and programs that provide services such as genetic testing and counseling, case management and psychosocial support for individuals and families impacted by sickle cell disease. This website promotes membership (cost involved) for both health professionals and patients/families; however a non-member can access basic information about sickle cell disease and sickle cell trait under Research and Screening heading.
The American Sickle Cell Anemia Association (A United Way Agency) - http://www.ascaa.org/
The American Sickle Cell Anemia Association (ASCAA) is an organization that provides quality and comprehensive services through diagnostic testing, evaluation, counseling and supportive services to individuals and families at risk for Sickle Cell Disease. They are based in the USA and offer local services to families affected by sickle cell anemia, which would not be helpful to Canadian patients; however there is an informative component of the website under FAQ (Frequently asked questions). In addition, information can be requested and mailed to the recipient. No membership is required.
Saint Justine Leucan Information Centre - http://www.centreinfo.leucan.qc.ca/en/?page_id=103
This site provides information on Sickle Cell disease for patients and families in French.
Department of Pain Medicine and palliative Care: Stop Pain.org - http://www.stoppain.org/pain_medicine/content/chronicpain/sickle.asp
The Department’s mission is to provide the highest quality, comprehensive care in pain management and palliative care, and to advance these disciplines nationally through research and innovative educational and patient care programs. The goal is to support state-of-the-art professional training for physicians, nurses and other disciplines; distance learning through our website; an educational program for pain and chemical dependency; and varied initiatives in patient and public education. Stop Pain.org is for health professionals who manage pain in chronic and palliative disease. This particular web page URL describes sickle cell crisis, signs and symptoms, treatment and management.
Sickle Cell Anemia Websites for Kids:
KidsHealth from Nemours - http://kidshealth.org/
The Nemours Center for Children's Health Media, a national leader (USA) in health education, creates KidsHealth.org as well as other online, print, and video programs. This site provides developmentally appropriate health information for children, teens, parents and health professionals on a variety of health problems. The site includes multiple hematology disease/traits such as thalassemias, hemophilia, Sickle Cell, Von Willebrands, and iron deficient anemias.
Sickle Cell Kids - www.sicklecellkids.org/sicklecell_temp.
This is an interactive site designed by Georgia Comprehensive Sickle Cell Center for children and adolescents to learn about their disease. It does require that you log in with first name and age, but no cost is involved. There are quizzes, supportive care information, games, and healthy living information.
Starlight’s Children’s Foundation - www.starlightcanada.org
Starlight Children's Foundation partners with experts to improve the life and health of kids and families around the world. On the site there is a video game designed to help kids with Sickle Cell anemia learn to manage their disease, to prevent and respond to symptoms of Sickle Cell episodes. Players will also receive information on blood tests, CT scans, MRI's and IV therapy.