Recommended Blood Disorder Websites for Health Professionals
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.
National Institutes of Health (NIH) National Heart, Lung and Blood Institute -
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
About Sickle Cell Anemia:
Sickle Cell Information Center - https://scinfo.org/
The mission of this site is to provide sickle cell patient and professional education, news, research updates and worldwide sickle cell resources. Their mission is to provide world class compassionate care, education, counseling, and research for patients with sickle cell disease; and ultimately to help break the sickle cycle. The site contains FAQ, as well as lists of books and articles/resources for health professionals and also for individuals and families. They also offer visual webinar presentations and list previous webinar presentations for ongoing viewing. Under resources there is a 15 part power presentation series on sickle cell disease. No membership is required. This site is an excellent source of information about sickle cell disease.
National Institutes of Health (NIH) National Heart, Lung and Blood Institute -
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.
Consensus Statement on the Care of Patients with Sickle Cell Disease in Canada -
The Consensus Statement on the Care of Patients with Sickle Cell Disease in Canada is a comprehensive summary of the current best practices in the prevention and management of sickle-cell-disease complications. It is meant to be a thorough and accessible resource for Canadian health-care providers, with an emphasis on the practical aspects of care for sickle cell disease. The Principles and Recommendations sections, in particular, should serve as a quick reference for care providers. Patients and their family members will also benefit from reviewing this document, and should feel empowered to use it as a tool to ask important questions and to advocate for themselves in medical settings.
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.
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.