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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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The aim of clinical trials is to evaluate the effectiveness and safety for patients of a medical intervention, based on comparable results: the outcome measures. Despite guid [...] Read more. Dr Makoto Suematsu and the Japan Agency for Medical Research and Development (AMED) hosted an IRDiRC Consortium Assembly face-to-face meeting on November 10-11, 2017 in Tokyo [...] Read more. In rare...
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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 disease research groups (consortia) and a Data Management and Coordinating Center that work together to improve availability of rare disease information, treatment,...
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Diseasemaps - World Maps of Chronic and Rare Diseases and other Syndromes and Conditions. Connect with people who share your condition and help each other. Do you like the tools that diseasemaps offers to those in need of support and understanding of their disease/condition? Would you like to...
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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 U.S. 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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Our purpose is to enable people with life-altering conditions to lead better lives. Explore our pioneering therapies, vision, and values at shire.com. The site uses cookies to provide you with a more responsive and personalized service. By using this site you agree to our use of cookies as set out in our cookie notice. Please read our privacy notice for more information on the cookies we use...
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Having previously studied Physiology at Edinburgh University Hannah then undertook her medical degree at Barts and the London. She completed her F1 year at the Royal Surrey County Hospital and is now working at Kingston Hospital in A&E, although she is taking a year out of training to play lacrosse for Scotland in the 2017 World Cup. She was treasurer of the Barts and the London Rare Diseases...
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ECRD is a biennial event covering research, development of new treatments, healthcare, social care, public health policies and support at international levels. “Rare Diseases 360° – collaborative strategies to leave no-one behind” is the overarching theme of ECRD 2018. This theme reinforces the unique quality of this foremost event for the rare disease community in Europe, bringing together and...
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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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Unique Patron Baroness Neville-Jones spoke about Unique in the House of Lords. Click here to read her speech (scroll down to column 140). An important issue relating to Unique's work to help all families affected by rare chromosome and single gene disorders. Feeling festive and wanting to do some fundraising in the lead up to Christmas? Why not invite some friends round for coffee & cakes and...
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A Moon Shot for Rare Disorders: Leave No one Behind Objectives of Conference Create a shared understanding of the patient journey and what “good” looks like Mobilize all stakeholders around common vision for Rare Disease Canada Create a guiding framework to map current resources, define gaps, identify opportunities and challenges, and prioritize needsFINAL AGENDA * To receive CORD member rates...
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Kaplan Test Prep offers test preparation, practice tests and private tutoring for more than 90 standardized tests, including SAT, GRE, GMAT, LSAT, USMLE & NCLEX. Kaplan Test Prep is accredited by the Accrediting Council for Continuing Education and Training or ACCET, a US Department of Education nationally recognized agency. ACCET promotes quality-oriented education and training through...
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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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We are one of the most integrated health delivery blogs in the country. providing care tips to our readers - the Rare disease awareness program to educate. Nowadays there are so many dentists out there. You just need to follow and consider certain key points to be able to receive the best provider on the market. Nowadays the best way to find the right Sa. Are you seeking a Business Insurance...
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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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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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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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