Rare Diseases Sites

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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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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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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...
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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...
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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...
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Top Rare Diseases Sites (18)
Over 150 skin disorders and terms described in detail, along with causes, symptoms and treatment options. If you've ever suffered from the irritating itch of a skin disorder, take heart… you're not alone. Every year millions of people suffer from some kind of skin disorder, skin disease or plain skin infections. Skin disorders are very common among the human being. There are not many statistics...
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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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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 living with a rare disease around the world, to advocate for rare diseases as an international public...
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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 play a role in helping diseasemaps make a larger impact? Become an Ambassador of one or more conditions...
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Skin-diseases.org helps you to get complete cure for various skin diseases and disorders types, problems and common conditions including treatment methods and prevention tips. Skin is known to be the largest organ in our body and the most sensitive one too. Skin diseases are prone to occur at a faster rate as it acts as the first line of defense against the foreign bodies like germs, dirt etc....
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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, clinical studies, and general awareness for both patients and the medical community. Opportunities...
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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 official site of The Balancing Act TV show, America´s morning show that´s about women, for women, and trusted by women airing on Lifetime TV at 7:30 AM. Behind the Mystery of: Rare and Genetic Diseases is a series produced with the intention of introducing and uniting patient, physician, and scientist with research, education and opportunity to revolutionize the way our health care system...
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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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Patients all over the world rely on plasma protein therapies to treat rare, chronic diseases. These individuals rely on the generosity and commitment of plasma donors. You may donate plasma in one of more than 600 licensed and certified plasma collection centers located in the U.S. and Europe. Plasma often is referred to as the "gift of life" because it is the essential starting material needed...
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Haemoglobin is the substance that colours blood red and carries oxygen to all major organs. To produce haemoglobin, in combination with iron that we consume through our diets, our bodies make proteins called porphyrins. Meet 4 young people who share with you their experiences and ideas on living with cystinosis. Disover how Kirsty in London, Irati in Bilbao, Mark in Amsterdam and Geoffrey in...
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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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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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Resources for dealing with Burkitts Lymphoma, a very rare form of cancer. This site aims to provide resources on Burkitt's Lymphoma, a very rare form of cancer with about only 300 new cases a year in the United States. Burkitt's Lymphoma, rare in most of the world, is the most common childhood cancer in Central Africa, and is one of the most aggressive of all human cancers. Burkitt's lymphoma...
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RareConnect.org, together with the world's leading rare disease patient groups, offering global online communities allowing people to connect around issues which affect them while living with a rare disease. This website received funding under an operating grant from the European Union’s Health Programme (2014-2020). Register now! Registration open for the European Conference on Rare Diseases &...
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