List of rare diseases index
[DOC File]Attached is a list of resources obtained from a variety of ...
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National Organization for Rare Diseases. 1 (203) 746-6518. Maintains database on hundreds of rare diseases. Provides networking opportunities for parents of children with rare diseases or disorders. Burn Prevention Foundation: 1 (610) 481-9810 or www.burnprevention.org. National Youth Sports Safety Foundation (617) 277-1171 or www.nyssf.org
[DOCX File]EJP RD – European Joint Programme on Rare Diseases
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āEncourages sharing of knowledge on rare diseases to support health care professionals, researchers and patient advocacy organizations with a networking budget to organize themselves into transnational (clinical) research networks that focus on a (group of) rare disease (s), a (group of) rare cancer (s) or on cohorts of undiagnosed patients that are suspected of suffering from a rare disease ...
[DOC File]Vasculitis score introduction - Rare Diseases Clinical ...
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Damage is scored separately in another index, the Vasculitis Damage Index, which is not the subject of this exercise. Recording disease activity. The list of items in BVAS for WG includes clinical symptoms and signs, as well as information obtained from additional tests (e.g., chest x …
[DOC File]NPC - National Institutes of Health
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Rare diseases are defined by the U.S. Orphan Drug Act as those with
[DOC File]Format elderly/pediatrics/women - Local index - WHO archives
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The Rare Diseases Act of 2002 (H.R. 4013, Public Law 107-280) provides the existing National Institutes of Health (NIH) Office of Rare Diseases (ORD) a statutory authorisation to increase the national investment in the development of diagnostics and treatments for patients with rare disorders.83 The Director of the ORD shall recommend an agenda ...
[DOCX File]Deemed Diseases in Australia
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This List comprises a list of diseases that are deemed to be work-related. The effect of this is to reverse the onus of proof. A worker with the disease who has been exposed to the relevant exposure in the course of their work is assumed to have developed that disease because of the exposure unless there is strong evidence to the contrary.
[DOCX File]Orphan drugs program: Discussion paper
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These have included improvements in technology to diagnose and identify rare diseases and subtypes of diseases, and in the ability to tailor therapies for these diseases and disease subtypes. Rare Voices Australia, the peak body representing Australians with rare diseases, claims there are between 6,000 and 8,000 known rare diseases.
[DOC File]PAGE DE GARDE
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The Slovak Rare Diseases Alliance was established at their first constitutive meeting held in Bratislava in Slovakia on 12 December 2011 and is composed of 12 patient organisations out of the 17 related to rare diseases in the country.
[DOCX File]Communicable Diseases Intelligence 2020 - Australian ...
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The ten rare communicable diseases and complications of rare communicable diseases under APSU surveillance in 2019 and listed on the report card were: acute flaccid paralysis, congenital cytomegalovirus infection, neonatal herpes simplex virus infection, perinatal exposure to HIV, paediatric HIV infection, severe complications of seasonal influenza, juvenile onset recurrent respiratory papillomatosis (JoRRP), congenital rubella syndrome, congenital varicella syndrome and neonatal varicella ...
[DOC File]WRITING AN ORPHAN DESIGNATION: A WORKSHOP
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i) For infectious diseases, search using "CDC prevalence " --you may often thereby find prevalence data from CDC. ii) Search using a pattern including "prevalence Olmsted County" to try to find confirmatory data drawn from the meticulous prevalence data of the home county of the Mayo Clinic (subject to obvious population biases).
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