Rare Diseases Sites

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The ECRD is recognised globally as the largest, patient-led rare disease event in which collaborative dialogue, learning and conversation takes place, forming the groundwork to shape future rare disease policies. Leading, inspiring and engaging all stakeholders to take action, the Conference is an unrivalled opportunity to network and exchange invaluable knowledge with all stakeholders in the...
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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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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...
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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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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...
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Top Rare Diseases Sites (16)
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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Rare Diseases International is the global alliance of people living with a rare disease of all nationalities across all rare diseases. RDI’s mission is to be a strong common voice for rare disease patients and families around the world. The global rare disease alliance advocates for rare diseases as an international public health priority, represents its members on international platforms and...
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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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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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NORD, a 501(c)(3) organization, is the leading patient advocacy organization dedicated to improving the lives of individuals and families living with rare diseases. Students for Rare Featured Student: Viridiana Murillo “I strongly believe that my professional and academic experience are in line with NORD’s mission and commitment to the identification, treatment, and cure of rare disorders...
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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 900 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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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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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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Harmony Biosciences is committed to people living with rare diseases. We develop & commercialize treatment options for central nervous system disorders such as narcolepsy. “At Harmony, we put the well-being of the patients we serve, and each of our employees, at the heart of all we do.”. Of everything we do "We put breakthrough science within reach".
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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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PinnacleCare personal health care advisory solutions helping individuals and organizations obtain access to a better health care experience. PinnacleCare is Partnering with Express Scripts to Provide Patients with Rare Diseases A Faster Path to Diagnosis and Treatment New Rare Conditions Care Value Program expands support services to facilitate second opinions that can improve health outcomes,...
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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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Honeycomb empower patients suffering from rare diseases by providing them with the ability to securely store, access, and share their health information all in one. Honeycomb Health, with your permission, will securely hold your medical data from all your healthcare providers, so you can access everything from one place, wherever you are. We encourage you to get started today as we spend the...
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Take Five Whippets is a small hobby “kennel” located in Portland, Oregon, part of the beautiful Pacific Northwest. My whippets are first and foremost beloved pets and companions. They live in the house, sleep in the bedroom, and even have their own room with a dog door to the backyard. As companions, it is very important that they have good temperaments and are easy to live with. It’s just as...
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