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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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...
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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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Top Rare Diseases Sites (19)
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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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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Rare Diseases - Acer Therapeutics , an orphan pharma company, is developing treatments for ehlers-danlos and maple syrup urine diseases. Dec. 20, 2016 – Acer Therapeutics Announces the Formation of its Scientific Advisory Board (SAB). Dec. 13, 2016 – Acer Therapeutics Obtains Exclusive License to Celiprolol Pivotal Clinical Data from AP-HP. We are developing ACER-001 as the first potential...
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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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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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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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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 video of the event — More information Speakers’ presentations This event took place under the...
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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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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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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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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. Family Moves Across State Lines to Receive Better Access “There are millions of people, like Gabby and her family, who benefit when you take action in the fight to improve diagnosis, treatments and cures for rare diseases.” Read...
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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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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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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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