You can find information and support groups on the Internet about sickle cell disease (SCD), myelodysplastic syndromes (MDS), thalassemia, and other anemias. Below are a list of Web sites that offer information and support. But your healthcare provider is the best source for specific answers about your health or the healthcare of your loved one.
The oldest and largest patient support organization for bone marrow diseases. The AAMDS Web site provides many educational and support resources, including an Ask the Experts section.
Dedicated to providing information for patients and families, healthcare providers, and those interested in learning about thalassemia. The Web site provides education, news, conference, and advocacy information.
A nonprofit organization founded by parents of children with Diamond-Blackfan anemia
This service of the NIH provides regularly updated information about clinical trials, including their locations and contact information.
The ASCAA provides people and families at risk for sickle cell disease services through diagnostic testing, evaluation, and counseling.
The Web site has information on how to address social, emotional, and physical needs of the caregiver. Information is also provided on communicating with healthcare professionals, managing medical care at home, and dealing with financial issues.
An alliance of patients, caregivers, and healthcare professionals who work together to alleviate suffering. The Web site has many resources, including recommended books about caring for someone with SCD.
An educational resource for people with SCD. The Web site provides information on news and events about sickle cells disease and can help people find local organizations in their state.
A fun, educational site for kids with SCD.
This site requires Adobe Flash®.
Dedicated to fighting blood cancers, the LLS provides many resources for patients and healthcare professionals, including news, discussion boards, and disease information.
An international organization devoted to the prevention, treatment, and study of MDS.
*These Web sites are maintained by third parties over whom Novartis Pharmaceuticals Corporation has no control. As such, Novartis Pharmaceuticals Corporation does not guarantee the accuracy, completeness, adequacy, or any other aspect of the information contained on the sites.
