More Health Resources

The official website of the American Academy of Family Physicians (AAFP) has information about CME, practice management and clinical information, and online access to two journals: American Family Physician and Family Practice Management.

The American Academy of Pediatrics (AAP) is a non-profit organization of 60,000 pediatricians that provides resources for the health, safety and well-being of infants, children, adolescents and young adults. The organization was founded in 1930 by pediatricians who wanted an independent forum focused on children’s needs. For nearly 80 years, the AAP has supported and promoted the idea that children have special developmental and health needs.

The AAP was our Spotlight Organization for the January 2009 issue of Anemia Watch.

The American Association of Kidney Patients (AAKP) is a national nonprofit kidney patient organization reaching one million patients, family members, renal professionals and friends affected by kidney disease. Formed 40 years ago, the AAKP uses educational and supportive programs to improve the lives of fellow kidney patients and their families by helping them to deal with the physical, emotional and social impact of kidney disease.

The American College of Rheumatology (ACR) is an organization of and for physicians, health professionals, and scientists that advances rheumatology through programs of education, research, advocacy and practice support that foster excellence in the care of people with or at risk for arthritis and rheumatic and musculoskeletal diseases.  The site provides information on more than 100 types of arthritis and rheumatic disease; educational resources for physicians and health professionals; access to two leading scientific journals Arthritis & Rheumatism and Arthritis Care & Research; and much more.

AMDA, the professional association of medical directors, attending physicians, and others practicing in the long term care continuum, is dedicated to excellence in patient care and provides education, advocacy, information, and professional development to promote the delivery of quality long term care medicine.

The American Red Cross shelters, feeds and counsels victims of disasters; provides nearly half of the nation's blood supply; teaches lifesaving skills; and supports military members and their families. The Red Cross is a charitable organization – not a government agency – and depends on volunteers and the generosity of the American public to perform its humanitarian mission.

ASCO is a professional organization representing physicians who care for people with cancer. With more than 25,000 members, ASCO is committed to improving cancer care through scientific meetings, educational programs and peer-reviewed journals. Patient-oriented cancer information is available at www.cancer.net.

The American Society of Hematology (ASH) is committed to furthering the understanding, diagnosis, treatment, and prevention of disorders affecting the blood, bone marrow, and the immunologic, hemostatic and vascular systems. The site provides information for medical professionals and patients about research, clinical care, education, training, and advocacy in hematology.

ASH’s public education campaign, Blood: The Vital Connection, showcases the important role of blood in overall health. Their online resource contains hematologist-approved information about risk factors, preventive measures and treatment options for common blood disorders such as anemia, cancer, and bleeding and clotting disorders. The program offers helpful resources for both healthcare professionals and consumers including links to the latest research, printable materials, and information on clinical trial participation.

The American Society of Nephrology (ASN), founded in 1966, is a non-profit organization of over 11,000 physicians and scientists dedicated to the study of nephrology.  ASN publishes the Journal of the American Society of Nephrology (JASN), the Clinical Journal of the American Society of Nephrology (CJASN), and the Nephrology Self-Assessment Program (NephSAP).  ASN also offers yearly educational programming, including Renal Week, Renal WeekEnds, and the Board Review Course & Update.

The Aplastic Anemia & MDS International Foundation (AA&MDSIF) is an independent nonprofit organization whose mission is to support patients, families, and caregivers coping with Aplastic Anemia (AA), Myelodysplastic Syndromes (MDS), Paroxysmal Nocturnal Hemoglobinuria (PNH), and related bone marrow failure diseases.

The Arthritis Foundation is a national nonprofit organization providing resources for education, research, and advocacy for patients living with arthritis. Founded in 1948, it is the largest private, nonprofit contributor to arthritis research in the world, funding more than $380 million in research. With more than 500,000 volunteers and 41 local chapters nationwide, the Arthritis Foundation offers a large number of programs and services to help patients take control of their arthritis.

The Arthritis Foundation was our Spotlight Organization for the April 2009 issue of Anemia Watch.

The mission of the Daniella Maria Arturi Foundation (DMAF) is to stimulate and support advanced clinical and laboratory research and clinical care initiatives in Diamond Blackfan Anemia (DBA), while increasing DBA awareness among the scientific, medical, and government communities. DBA is a rare red cell aplasia, found to be associated with a defect in ribosome biogenesis and complicated by possible bone marrow failure, congenital birth defects and a predisposition to cancer. The collaboration of these efforts aim to enhance the understanding of DBA to make improvements in diagnosis, treatment, and direct patient care, while working toward a cure for DBA patients around the globe.

Dialysis Patient Citizens (DPC) is an independent, nationwide, non-profit, patient-governed dialysis patient organization. They are dedicated to improving dialysis patients' quality of life by developing awareness of dialysis-related issues, advocating for dialysis and pre-dialysis patients, improving the partnership between patients and caregivers, and promoting favorable public policy.

DPC was our Spotlight Organization for the July 2008 issue of Anemia Watch.

The Diamond Blackfan Anemia Foundation (DBAF) is a nonprofit organization which generates funds for the charitable and scientific purpose of furthering the knowledge of the disorder through clinical study, laboratory research, publications and teaching. The DBAF website offers information for patients, DBA family members, health care professionals and other interested parties. In conjunction with the Daniella Maria Arturi Foundation, the DBAF publishes a semi-annual newsletter containing personal DBA stories, clinical trial information, current research, and activities.

Fanconi Anemia Research Fund, Inc. was incorporated in 1989 as a tax-exempt non-profit organization.  The mission of the Fund is to find effective treatments and a cure for Fanconi anemia and to provide education and support services to affected families worldwide.  Fanconi anemia is a rare genetic disease which can present many health challenges including skeletal anomalies, small size, kidney and gastrointestinal problems, and mental retardation or learning disabilities.  Most patients develop bone marrow failure and many develop acute myelogenous leukemia.  Patients who survive into adulthood are extremely likely to develop head and neck, gynecological, and/or gastrointestinal cancer.  For further information please visit www.fanconi.org.

The United States Food and Drug Administration (FDA) is the government agency responsible for protecting the public health by assuring the safety, efficacy and security of human and veterinary drugs, biological products, medical devices, the nation’s food supply, cosmetics and products that emit radiation. The FDA is responsible for advancing the public health by helping to make medications and foods more effective, safer and more affordable; and by helping the public get accurate, science-based information in order to use medicines and foods to improve their health.

HealthyWomen Informed Empowered, formerly the National Women’s Health Resource Center, is the leading independent health information source for women. HealthyWomen develops a wide array of print and online health information that is original, objective, approved by medical experts and includes the latest medical advances. For 20 years, the organization has been a trusted resource for millions of women who visit its website, use its publications and read health information it has supplied through healthcare professional’s offices and the media.

The NWHRC was our Spotlight Organization for the October 2008 issue of Anemia Watch.

The Hereditary Hemorrhagic Telangiectasia Foundation International is a non-profit organization dedicated to supporting patients and families and to educating medical professionals who are faced with the challenges of managing Hereditary Hemorrhagic Telangiectasia (HHT), also known as Osler-Weber-Rendu Syndrome. HHT is an inherited disease that affects over one million people worldwide. It is caused by defective blood vessels in several organs, which can lead to bleeding and sometimes anemia. Although HHT is treatable, it can result in serious health problems if not promptly diagnosed and treated. Through funding research, educating patients and physicians, advocating for patients, and engaging the scientific and medical community, the HHT Foundation International hopes to find a cure for HHT while saving the lives and improving the well-being of individuals and families affected by HHT.

Medicare is a health insurance program administered by the Centers for Medicare and Medicaid Services (CMS). Those eligible include people age 65 or older, some disabled people under age 65, and people of all ages with End-Stage Renal Disease (permanent kidney failure treated with dialysis or a transplant).

Medicare offers a Dialysis Facility Compare tool for kidney disease patients. This tool offers detailed information about the 4,700 dialysis facilities certified by Medicare and allows users to compare facilities in a geographic region. In addition to daily services offered, patients can compare how well facilities nationwide are able to control the anemia of their patients, how well waste is removed from their patients’ blood during dialysis, and whether their patients live as long as expected.

Medicare also has a list of helpful questions for kidney patients to ask their dialysis care providers, including questions specifically for doctors, nurses, social workers, and dieticians.

The Renal Support Network (RSN) is a nonprofit, patient-focused, patient-run organization established in 1993 to provide non-medical services to those affected by chronic kidney disease (CKD). Through its publications and programs, RSN strives to help patients develop their personal coping skills, special talents, and employability by educating and empowering them (and their family members) to take control of the course and management of the disease.

Shwachman-Diamond Syndrome Canada is dedicated to raising funds to support research into SDS, disseminating current medical information regarding SDS, heightening awareness of SDS in the broader medical community to allow earlier diagnosis and treatment, and developing a network of contacts and resources to assist people with SDS.

The official website of the Society of Critical Care Medicine (SCCM) is designed for health care professionals. SCCM is a multidisciplinary, multiprofessional organization dedicated to ensuring excellence and consistency in the practice of critical care medicine. The site offers information on a variety of activities that promote excellence in patient care, education, research, and advocacy.

The Thalassaemia International Federation is dedicating to promoting awareness about thalassaemia, promoting and supporting studies and research for the improvement of prevention and clinical care strategies and for achieving the total cure of thalassaemia. Their organization aims to disseminates the knowledge, experience and expertise gained from countries with successful control programs to those in need as well as attain the right of every patient to equal access to quality medical care.