Rarediseases.org

National Organization for Rare Disorders NORD

WebThe mission of NORD is to improve the health and well-being of people with rare diseases by driving advances in care, research and policy. Advocating for Patient …

Actived: 5 days ago

URL: rarediseases.org

List of Rare Diseases A-Z Database NORD

(9 days ago) WebA rare disorder is a disease or condition that affects fewer than 200,000 Americans. Cumulatively, there are more than 7,000 rare diseases affecting more than 30 million …

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NORD Rare Disease Center of Excellence Database NORD

(Just Now) WebNORD is committed to breaking down silos and building bridges so that people living with a rare disease can achieve their best health and well-being. Our belief is that the Center of …

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Functional Neurological Disorder

(3 days ago) WebFunctional neurological disorder (FND) is a medical condition in which there is a problem with the functioning of the nervous system and how the brain and body …

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Antisynthetase Syndrome

(3 days ago) WebAffected individuals can also have nonspecific symptoms like fatigue, unexplained fevers and unintended weight loss. The exact, underlying cause is not fully …

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Hereditary Neuralgic Amyotrophy

(1 days ago) WebHereditary neuralgic amyotrophy (HNA) is a rare genetic disorder characterized by recurrent episodes of severe pain in the shoulder and arm. In most …

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New Report Finds Medical Treatments for Rare Diseases …

(Just Now) WebWashington, DC, March 4, 2021 —As US policymakers consider options to address rising health care costs while still meeting the needs of patients, a new report …

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Pseudohypoparathyroidism

(4 days ago) WebAdditional symptoms and findings may include stiffness or cramps in the arms and/or legs, palpitations, and/or abdominal pain. In addition, individuals with …

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Complete DiGeorge Syndrome

(6 days ago) WebComplete DiGeorge syndrome is a rare disorder in which children have no detectable thymus (athymia). The thymus is a gland located on top of the heart. The …

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X-linked Retinoschisis

(5 days ago) WebX-linked retinoschisis (XLRS) is a genetic condition affecting boys and men. It is typically diagnosed in childhood, in some cases as early as three months of age. The …

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Financial Assistance For Patients With Rare Diseases NORD

(3 days ago) WebThe Rare Disease Educational Support Program reimburses registration costs for rare disease-specific educational offerings such as workshops, nutrition classes, and …

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NIH/Office of Rare Disease Research

(Just Now) WebThe Office of Rare Disease Research was established in 1993 within the Office of the Director (OD), National Institutes of Health (NIH), to respond to the reporting …

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Committing to Care, Access, Equity and Research: NORD …

(4 days ago) WebNational Organization for Rare Disorders® (NORD) provides new designation to medical centers to define standards for high-quality specialized care for rare disease …

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NIH/Office of Rare Disease Research

(8 days ago) WebDescription. The Office of Rare Disease Research was established in 1993 within the Office of the Director (OD), National Institutes of Health (NIH), to respond to the reporting …

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Freiberg’s disease

(1 days ago) WebFreiberg’s disease is rare condition that primarily affects the second or third metatarsal (the long bones of the foot). Although people of all ages can be affected by this condition, …

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Warm Autoimmune Hemolytic Anemia

(2 days ago) WebA decreased number of red blood cells (anemia) may cause fatigue, weakness, a pale skin color (pallor), dizziness, palpitations, and shortness of breath …

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Rare Disease Advisory Councils

(Just Now) WebA Rare Disease Advisory Council (RDAC) acts as an advisory body that gives the rare disease community a stronger voice in state government. In 2015, the first RDAC was …

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