Rarediseases.org

World Health Organization (WHO)

Description. The World Health Organization (WHO) is an international organization with headquarters in Geneva, Switzerland, and regional offices around the world. The objective of WHO is the attainment by all peoples of the highest possible level of health. As defined by the WHO, health is a state of complete physical, mental, and social well

Actived: 9 days ago

URL: rarediseases.org

Patient and Caregiver Resource Center

Patient and Caregiver Resource Center. Since 1983, NORD has been the primary source of support and information for patients and families affected by rare diseases. This Resource Center provides patients and caregivers with free webinars, fact sheets, infographics and other helpful materials to guide you on your journey with a rare disease.

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National Association of Psychiatric Health Systems

Description. The National Association of Psychiatric Health Systems (NAPHS) represents behavioral healthcare systems that are committed to the delivery of responsive, accountable, and clinically effective prevention, treatment, and care for children, adolescents, adults, and older adults with mental and substance use disorders.

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Endocrine Society

Description. The Endocrine Society empowers high-quality, equitable healthcare for people with hormone health conditions, including diabetes and obesity, infertility, thyroid conditions, osteoporosis, and hormone-related cancers. Together, we promote an environment that helps people of all backgrounds and ethnicities access the medical care

Category:  Cancer,  Medical Go Health

Undiagnosed Rare Disease Patients

The UDN is the leading clinical research study for undiagnosed patients. Funded by the National Institutes of Health (NIH) Common Fund, the study bridges the gap between clinical care and research by bringing together experts from around the country to seek diagnoses for the most complex undiagnosed cases. Using advanced technologies and leading experts, the UDN …

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Rare Disease Database

Hereditary neuralgic amyotrophy (HNA) is a rare genetic disorder characterized by recurrent episodes of severe pain in the shoulder and arm. In most cases, pain may persist for a few hours to a few weeks and is followed by wasting and weakness of the muscles (amyotrophy) in the affected areas. Additional symptoms including distinct facial

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Trigeminal Neuralgia

Trigeminal neuralgia (TN), also known as tic douloureux, is a disorder of the fifth cranial nerve (trigeminal nerve). The disorder is sometimes broken down into type 1 and type 2. TN type 1 (TN1) is characterized by attacks of intense, stabbing pain affecting the mouth, cheek, nose, and/or other areas on one side of the face.

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Pseudohypoparathyroidism

Pseudohypoparathyroidism is a hereditary disorder characterized by an inadequate response to the parathyroid hormone, although the hormone is present in normal amounts. This inadequate response affects bone growth in individuals with Pseudohypoparathyroidism. Affected individuals may also experience headaches, unusual sensations, weakness, easy

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Genetic and Rare Diseases (GARD) Information Center

Description. Established by the National Human Genome Research Institute (NHGRI) and the Office of Rare Diseases (ORD) at the National Institutes of Health, the Genetic and Rare Diseases Information Center gives health care providers and their patients immediate access to experienced information specialists who can supply current and accurate information about …

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Immune Deficiency Foundation

These individuals often find it difficult to receive specialized health care, proper diagnosis and treatment. Individuals affected by primary immunodeficiency diseases also experience difficulties financing their health care, finding educational materials on the disease and locating others with whom to share their experiences. The mission of

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

National Organization for Rare Disorders® (NORD) provides new designation to medical centers to define standards for high-quality specialized care for rare disease patients Washington, DC, November 4, 2021— Today, the National Organization for Rare Disorders (NORD) announced 31 NORD Rare Disease Centers of Excellence across the United States, …

Category:  Medical Go Health

NORD Rare Disease Centers of Excellence – Find a Center

NORD is not a medical provider or health care facility and thus can neither diagnose any disease or disorder nor endorse or recommend any specific medical treatments. Patients must rely on the personal and individualized medical advice of their qualified health care professionals before seeking any information related to their particular

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Diversity, Equity & Inclusion

Part 1: Navigating Diversity, Equity, and Inclusion in Rare Disease Non-Profits. Dr. Keri Norris, VP of Health Equity, Diversity, and Inclusion at the National Hemophilia Foundation discusses how systemic barriers and social determinants of health can impact a person’s health. Speaker: Keri Norris, PhD, MPH, MCHES.

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Congenital Athymia

Congenital athymia is a rare disorder in which children have no detectable thymus (athymia). The thymus is a gland located on top of the heart. The thymus produces specialized white blood cells called T cells that fight infections, especially viral infections. The T cell count is the highest in infants in the first 2 years of life and then

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Medical Nutrition

Unfortunately, medical nutrition is expensive and often not covered by insurance. For example, the average annual cost of formula for the rare disease phenylketonuria (PKU) can be up to $12,000, depending on factors such as age. 2 Many insurers decline to cover medical nutrition because FDA does not regulate it as a drug. Additionally, insurers

Category:  Nutrition,  Medical Go Health