Rare Diseases Sites

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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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Rare diseases, by definition, are diseases that affect fewer than 200,000 people in the United States. Yet, they present a significant health care concern since there are almost 7,000 rare diseases, affecting more than 25 million Americans and their families. Rare diseases may involve chronic...
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The eight E-Rare joint call for funding multilateral research projects on rare diseases (JTC 2016) on "Clinical research for new therapeutic uses of already existing molecules (repurposing) in rare diseases" is now open. E-Rare associates with Blackswan Foundation to co-organize 3rd International...
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Rare Disease Cycling Team races bicycles to raise awareness for and promote the development of therapies across a broad range of orphan diseases. Join us! Masse locks in NUE Series win for Masters, earns trip to LaRuta September 6, 2015. Stokesville, VA. The 17th annual Shenandoah Mountain 100...
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Top Rare Diseases Sites (18)
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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A rare disease is one that affects fewer than 200,000 Americans at any given time. According to the National Institutes of Health, there are between 6,000 and 7,000 rare diseases affecting from 25 to 30 million Americans. Approximately 50% of the people affected by rare diseases are children. Since 1983, more than 2,200 rare disease treatments have entered the research pipeline and more than...
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Website Sponsor Free Designed and Developed by Silvana Scibetta. Logo Designed by Tori Seyd. Neurogenetics rare disease-Children’s Hospital Philadelphia,Dr. David Lynch-. Diary mom Jorgelina Borda Amezaga-Chloe is a child with rare disease. Physiotherapy-speech therapy rare disease-Aspandem.
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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 with diagnosis of rare diseases. Users seeking information related to personal conditions are urged...
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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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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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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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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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The Rare Diseases Clinical Research Network (RDCRN) an initiative of the Office of Rare Diseases Research, NCATS, is made up of 22 research 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 provides...
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While some diseases impact millions of people, only those affecting fewer than 200,000 people are considered rare. The United States Genetic and Rare Diseases Information Center reports that there are more than 6,000 rare diseases on record. In 2014, approximately 30 million Americans are living with a rare disease; that’s nearly one in ten people. Patients and families coping with rare...
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Athletes is a nonprofit organization that inspires the rare disease community with hope through the power of sport. Our national network of chapters is run by current football student-athletes. On March 3, our Penn Chapter held its first Lift For Life event. The Quakers raised over $5,800 to tackle rare diseases. Former Baylor Chapter President's Spencer Drango and Andrew Billings team up for...
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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 530 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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Join the over 3000 people that have signed up to Rare Barometer Voices survey on the impact of rare diseases on daily life! List of the latest marketing authorisations and medicinal products designations. We comply with the HONcode standard for health trustworthy information. To find out more about how you can join RareConnect, contact us. Find out the latest news from the rare disease community!
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