Finding useful health information on the Internet can be difficult, but we’re here to help. This page gathers quality information from trusted sources. You can learn more about the disease, visit handpicked websites, and find resources to help you in your daily life. Need more information? Click the menu on the left to find more!
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Medical Disclaimer
The medical information on this site is provided as an information resource only, and is not to be used or relied on for any diagnostic or treatment purposes. This information is not intended to be patient education, does not create any patient-physician relationship, and should not be used as a substitute for professional diagnosis and treatment.
Hemoglobinopathies
Overview
Hemoglobinopathies are also known as hemoglobin disorders. Hemoglobin is a chemical found in the blood and its function is to carry oxygen from the lungs to the rest of the body. Hemoglobinopathies occur when there is a problem with this chemical and it is not able to function correctly. Symptoms of hemoglobinopathy range from none to severe shortness of breath and fatigue. If untreated, hemoglobinopathies may potentially lead to organ damage or even death. In newborns, early signs include excessive tiredness, fatigue while eating or crying, and shortness of breath. Sickle cell anemia and thalassemia are common examples of hemoglobinopathies. Most are genetic disorders, meaning that they may be transferred from parents to their children. This condition often requires lifelong management, including frequent check-ups, medications, and/or blood transfusions.
Trusted Medical Sites
Genetic & Rare Diseases Information Center (GARD)
GARD provides the public with access to current, reliable, and easy-to-understand information about rare or genetic diseases in English or Spanish.
Support Organizations
Support organizations can provide help and guidance in areas such as peer matching, education and training, and therapy and counseling.
Disease Resources
Resources can help guide your quest for factual and reliable information.
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The Progeria Handbook; A Guide for Families and Health Care Providers of Children with Progeria.
This 100-page handbook helps answer many questions for children with Progeria about how to optimize quality of life through daily care and medical treatment. Contains basic health facts,daily care recommendations and extensive treatment guidelines.
AAMDSIF Online Academy (webinars)
200+ FREE webinars for patients, families and caregivers about rare blood cancers and bone marrow failure diseases.
Educational Resources
Publications, links to patient conferences and webinars
Disease Information
Descriptions of various rare blood cancers and bone marrow failure diseases.