RAREBESTPRACTICES.EU
RareBestPracticesRareBestPractices
http://www.rarebestpractices.eu/
RareBestPractices
http://www.rarebestpractices.eu/
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RareBestPractices | rarebestpractices.eu Reviews
https://rarebestpractices.eu
RareBestPractices
rarebestpractices.eu
RareBestPractices
http://www.rarebestpractices.eu/home
A platform for sharing best practices for the management of rare diseases. Coordinated by the Istituto Superiore di Sanità. National Centre for Rare Diseases. How to get there. 24 November 2016, Rome Italy. RARE-Bestpractices Conference. REGISTRATION OPEN! The RARE-Bestpractices resources collates validated research recommendations for diagnosis and treatment of rare diseases. They are presented alongside information on ongoing trials. RARE-Bestpractices workshop at INSERM in Paris. 25 October 2016 Paris.
Credits
http://www.rarebestpractices.eu/pagine-4-credits
A platform for sharing best practices for the management of rare diseases. Coordinated by the Istituto Superiore di Sanità. National Centre for Rare Diseases. How to get there. Material on this site is based on texts written by members of the respective. RARE-Bestpractices partners and on the RARE-Bestpractices description of work. DoW) Annex I of the Grant Agreement. Editing by Cristina Morciano (ISS). Content update by Cristina Morciano (ISS) and Sabina Tonon (form March 2014 to March 2015)(ISS).
Gallery
http://www.rarebestpractices.eu/pagine-6-gallery
A platform for sharing best practices for the management of rare diseases. Coordinated by the Istituto Superiore di Sanità. National Centre for Rare Diseases. How to get there. Annual meeting, 20-21 March 2014. Istituto Superiore di Sanità, Rome Italy. Rare Diseases and Orphan Drugs. An International Journal of Public Health Journal Website. Call for Paper Submissions. To know project achievements and events Sign up. Concise information about project objectives and participants View Pdf. How to get there.
The Advisory Board
http://www.rarebestpractices.eu/pagine-13-the_advisory_board
A platform for sharing best practices for the management of rare diseases. Coordinated by the Istituto Superiore di Sanità. National Centre for Rare Diseases. How to get there. Federal Research Center of Pediatric Hematology, Oncology and Immunology named after Dmitry Rogachev, Russia. Hugh J.S. Dawkins. Public Health Division and Clinical Services, Department of Health Government of Western Australia, Australia. New Zealand Organisation for Rare Disorders, New Zealand. Vadim I. Mazurov. Saint Petersburg...
Newsletters
http://www.rarebestpractices.eu/pagine-22-Newsletters
A platform for sharing best practices for the management of rare diseases. Coordinated by the Istituto Superiore di Sanità. National Centre for Rare Diseases. How to get there. N 5 - June. N 4 - February. N 3 - December. N 2 - July. N 1 - December. Rare Diseases and Orphan Drugs. An International Journal of Public Health Journal Website. Call for Paper Submissions. To know project achievements and events Sign up. Concise information about project objectives and participants View Pdf. How to get there.
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RareGUIDELINE
http://www.rbpguidelines.eu/faq
As development progresses and use of the system grows, we will continue to add answers to frequently asked questions. Please refer back as information will update over time. 2 - About the Database. Do I need a login to access the database? How does the RARE-Guideline database define a rare disease? Categorised Questions and Answers:. Q - Privacy Policy. The privacy laws that apply in the country where the database is hosted/registered (Ireland) will be respected. 2 - About the Database. The RARE-Bestprac...
RareGUIDELINE
http://www.rbpguidelines.eu/masterlist
If you know the title of the guideline you seek you can browse using the first letter of the title by clicking on the relevant character in the alphabet below. Titles may be followed by one or more flags (e.g. These denote the original language in which the guideline was written and the available translations. A (View Summary Descriptions). A consensus approach to wound care in epidermolysis bullosa. A Dutch guideline for the treatment of scoliosis in neuromuscular disorders. Anaesthesia recommendations ...
RareGUIDELINE
http://www.rbpguidelines.eu/browsedisease
Browse Guidelines By Disease. Step 1: Limit the documents listed to a particular disease/group of diseases by clicking on the name of the disease/group. Step 2: The name of the disease/group will appear, followed by a summary description (where available), followed by a list of available guidelines. Titles may be followed by one or more flags (e.g. These denote the original language in which the guideline was written and the available translations. A (View Summary Descriptions). The RARE-Bestpractices pr...
RareGUIDELINE
http://www.rbpguidelines.eu/glossary
The project will also aim to develop guideline terms to provide greater clarity regarding terminology and thereby enhance understanding of the guidelines and the standards being applied. The terms will be developed and expanded over time to continually address changing needs as the database expands. Powered by the (TWEEK!
RareGUIDELINE
http://www.rbpguidelines.eu/statistics
The database can provide statistical information telling users, for example, which countries are accessing these guidelines, enabling future efforts to be focussed according to the present status of the audience (e.g. disseminate, publicise guidelines to those not currently accessing them). Well provide more information on this aspect of the resource as work progresses. Top Ten Accessed Guidelines. Anaesthesia recommendations for patients suffering from myasthenia gravis. Management of congenital aniridia.
RareGUIDELINE
http://www.rbpguidelines.eu/about
Which diseases are covered in this guidelines database? Mitochondrial disease (multiple disorder). Coarctation of the aorta in the newborn. Hereditary Spastic Paraplegia (Strümpell-Lorrain disease). In order to maintain the database as rare disease specific resource, additional topics will be required to meet criteria for a rare disease: all conditions included in the RARE-BestPractices databases must possess an assigned Orpha number OR must be shown to affect fewer than 5 in 10,000 persons in Europe.
RareGAP
http://www.rbpresearch.eu/browsedisease
Step 1: Limit the documents listed to a particular disease/group of diseases by clicking on the name of the disease/group. Step 2: The name of the disease/group will appear, followed by a summary description (where available), followed by a list of available research recommendations. Step 3: Click a fast find character to jump to that part of the list. Step 4: Click on the name of a research recommendations to access more information. Powered by the (TWEEK!
RBP Web Community • Index page
http://www.rbpguidelines.eu/forum
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RareBestPractices
A platform for sharing best practices for the management of rare diseases. Coordinated by the Istituto Superiore di Sanità. National Centre for Rare Diseases. RARE-Bestpractices helps health professionals, patients, and policymakers to be up to date with the best emerging information on rare diseases. RARE-Bestpractices promotes communication on the clinical management of rare diseases by disseminating trustworthy best practice guidelines globally. 2nd EU Conference on European Reference Networks.
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RARE Better Body Challenge | WE ARE RARE!
RARE Better Body Challenge. And the Winners are? October 2, 2011. Good evening Better Body Challengers. Tomorrow at 6:00pm at RARE CF we will be announcing the winners of the 4th RARE Better Body Challenge. We hope to see everyone tomorrow! The Final Week is Here! September 26, 2011. So, finish this week strong…don’t slack off now…every point counts! Your next weekly challenge is…. September 18, 2011. Next Week’s Challenge is…. September 11, 2011. Going to the movies in the theater is not. If you are req...
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RareBibles.com: Rare Bibles, Antique Bibles & Rare Bible Leaves
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