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Global Genes is a leading rare disease advocacy organization with global reach to the worldwide rare community of patients, caregivers, advocates and clinical partners. Our mission is to eliminate the challenges of rare disease. Global Genes is a non-profit 501(c)(3) corporation advocating for rare disease globally. Privacy Policy. Global Genes Building awareness and communities to support and...
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The Rare Diseases Clinical Research Network (RDCRN) an initiative of the Office of Rare Diseases Research, NCATS, is made up of 21 research groups (consortia) and a Data Management and Coordinating Center that are working together to improve availability of rare disease information, treatment, clinical studies, and general awareness for both patients and the medical community. The RDCRN...
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The NGO Committee for Rare Diseases brings together knowledge and experts to promote rare diseases as a priority in global health, research and social care. The inauguration of the NGO Committee for Rare Diseases took place on 11 November at the United Nations Headquarters in New York. Watch the...
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FindZebra is a specialised search engine supporting medical professionals in diagnosing rare diseases. The term 'zebra' is medical slang for a surprising diagnosis: 'When you hear a gallop, think horse, not zebra'. FindZebra is intended primarily for physicians and other professionals concerned...
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RDI brings together national and regional rare disease patient organisations from around the world as well as international rare disease-specific federations to create the global alliance of rare disease patients and families. RDI’s mission is to be a strong common voice on behalf of all people...
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You are leaving the Recordati Rare Diseases U.S. website. By selecting OK, you are leaving the Recordati Rare Diseases website. This external link is provided for your convenience. Please note that external links or web sites may not be controlled by Recordati Rare Diseases, and thus not subject to our Privacy policy and Terms of use. Thank you for visiting our site. We hope your visit was...
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An hour ago i saw Noah run on Balboa Over highway 805, had no idea what it was about and looked it up. Wow Noah what a great thing you are doing, pretty amazing! And how crazy to think this journey will end in another hour in ocean Beach, at least that is the plan I read. Great accomplishment for a great cause! Well done Noah, you are a remarkable man!! Run For Rare is an ongoing movement...
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Rare Disease United's mission is to build a strong rare disease community throughout the USA, help provide support, information raise awareness & advocate for families. Our mission is to address the unmet needs of the rare disease community including raising awareness of rare diseases, reduce diagnosis time, reimbursement and other insurance issues, and relieving the isolation felt by those...
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NORD is a unique federation of individuals and voluntary health organizations dedicated to helping people with rare diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment and cure of rare diseases through programs of education, advocacy, research, and patient services. Gaucher disease is a lipid storage disease caused by an enzyme deficiency...
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CORD provides a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders. CORD works with governments, researchers, clinicians and industry to promote research, diagnosis, treatment and services for all rare disorders in Canada. Learn More. Call for Nominations: CORD's 5th Annual Rarity Awards The award winners will be honoured at the...
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Este sitio nace por la profunda necesidad de encontrar el diagnostico y luego la cura para mi hija Chloe de 7 años. Desde que ingreso en el hospital Materno Infantil de Málaga 5 días después de haber cumplido los 3 añitos, Chloe ha pasado por decenas de médicos y hospitales, ha sido sometida a incontables pruebas, muchas de ellas muy dolorosas y horribles y hasta el día de hoy no tenemos un...
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Following on from seven successful events, 2016 sees the 8th year of the ever-growing European Conference on Rare Diseases & Orphan Products. This biennial conference is a unique opportunity to come together and exchange: it is the event at which to connect and share with all other members of the rare disease community. The ECRD is the only event which, from its small beginnings, has united all...
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The trails at Shenandoah 100 suit me pretty well, so it is actually the race where my results have been the most consistent. However, with Keck Baker, Brian Schworm and Jeremiah Bishop in attendance (just to name a few), a podium finish felt a little further away from my reach than usual. The dry conditions and the mild temperatures in the morning made for a fast start. This year again, few...
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The Rare Disease campaign will ultimately expand on the new strategy which entails 5 major themes – the true definition, research, screening diagnosis and. A rare disease, also referred to as an orphan disease, is any disease that affects a small percentage of the population. Most rare diseases are genetic, and are present throughout a person's entire life, even if symptoms do not immediately...
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Comprehensive patient and clinican information on rare kidney diseases. This website provides comprehensive information about the rare disease initiative of the Renal Association. It includes:. This highlights our commitment to produce high-quality, evidence-based information for both patients and clinicians. Information about nationally appointed expert groups (Rare Disease Groups, RDGs)....
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To empower rare & undiagnosed patients and their families with genomic information and community through advocacy, networking and support. Our mission is to set the standard of care for all families on a medical odyssey by making whole genome sequencing available to them through their insurance company as well as to help families emotionally and financially living with an undiagnosed child or a...
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Kaplan Test Prep offers preparation for more than 90 standardized tests, including entrance exams for secondary school, college and graduate school, as well as professional licensing exams. Kaplan also provides private tutoring and graduate admissions consulting services. Kaplan Test Prep is accredited by the Accrediting Council for Continuing Education and Training or ACCET, a US Department of...
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Support, resources and encouragement for people with rare diseases. To Search: simply begin typing in the name of the condition you wish to find. Results matching the partial name will be returned. The results will search through the name, abbreviation and alternate names of all conditions we have in our database. The results that are returned will be links to a page that will display a...
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Of the several thousand, currently pegged around 7000 reported rare diseases or disorders, except for a handful, most do not have epidemiological data available. Each one of these uncommon diseases widely varies in its prevalence. Considering the sheer number of identified rare and ultra rare diseases and their varying prevalence, it becomes nearly impossible to ascertain the total number of...
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