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World Rare Disease Day: Statement by Commissioner Stella Kyriakides, Brussel

Today, more than 6,000 rare diseases are affecting up to 36 million people in the EU. For those living with rare diseases - many of them children - quality … ....

Stella Kyriakides , European Reference Networks , European Health Data Space , European Health Union , Virtual Academy , World Rare Disease Day , Food Safety , French Presidency , Reference Networks , Joint Action , Clinical Patient Management , Cross Border Healthcare Directive , European Reference , More Information Factsheet , Rare Diseases European Reference ,

How digital health care can help treat chronic conditions

The European Health Data Space has the potential to be the foundation for a truly integrated health care system in Europe ....

Rafael Bengoa , Bastian Hauck , Tomislav Sokol , Mary Harney , Axel Kaehne , Tarja Stenvall , Barry Andrews , Guillaume Byk , John Bowis , European Reference Networks , Member Of The European Parliament , Digital Health Europe , European Health Data Space , World Health Organization , European Commission , International Diabetes Federation Europe , Digital Health , European People Party , European Health Management Association , European Union , Bilbao Institute For Health , Diabetes Online Community , Europe Group , Expert Group For Integrated Care , Bilbao Institute , Expert Group ,

Treatabolome project designed to shorten diagnosis-to-treatment time for patients with rare diseases

The Treatabolome project is a research initiative to develop a freely available, interoperable online platform to disseminate rare disease and gene-specific treatment information to healthcare professionals regardless of their level of specialized expertise to reduce treatment delays. This initiative is highly relevant to neuromuscular disorders as they are rare diseases by definition. In this special issue of the Journal of Neuromuscular Diseases, experts contribute Treatabolome-feeding systematic literature reviews on rare neurological and neuromuscular disorders. ....

Noord Holland , France General , European Research , European Reference Networks , Centre De Recherche En Myologie , Research Project , Neuromuscular Diseases , Guest Editor Gis , Sorbonne Universit , Institut De Myologie , Centre De Recherche , Rare Neurological Diseases , Rare Neuromuscular Diseases , Genome Phenome Analysis Platform , Reference Networks , Medicine Health , நூற்த் ஹாலண்ட் , பிரான்ஸ் ஜநரல் , ஐரோப்பிய ஆராய்ச்சி , ஐரோப்பிய குறிப்பு நெட்வொர்க்குகள் , ஆராய்ச்சி ப்ராஜெக்ட் , நரம்புத்தசை நோய்கள் , மையம் டி ரெக்ஃப்‌ச் , ரேர் நரம்பியல் நோய்கள் , குறிப்பு நெட்வொர்க்குகள் , மருந்து ஆரோக்கியம் ,

New initiative to reduce treatment delays for patients with rare diseases

The Treatabolome project is a research initiative to develop a freely available, interoperable online platform dedicated to disseminating rare disease and gene-specific treatment information to healthcare professionals regardless of their level of specialized expertise. ....

France General , Emily Henderson , European Research , European Reference Networks , Centre De Recherche En Myologie , Research Project , Neuromuscular Diseases , Guest Editor , Sorbonne Universit , Institut De Myologie , Centre De Recherche , Rare Neurological Diseases , Rare Neuromuscular Diseases , Genome Phenome Analysis Platform , Reference Networks , Rare Disease , Research Project , பிரான்ஸ் ஜநரல் , எமிலி ஹென்டர்சன் , ஐரோப்பிய ஆராய்ச்சி , ஐரோப்பிய குறிப்பு நெட்வொர்க்குகள் , ஆராய்ச்சி ப்ராஜெக்ட் , நரம்புத்தசை நோய்கள் , விருந்தினர் ஆசிரியர் , மையம் டி ரெக்ஃப்‌ச் , ரேர் நரம்பியல் நோய்கள் ,

No deal Brexit could have detrimental impact for four million people in UK living with a rare disease

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No deal Brexit could have detrimental impact for four million people in UK living with a rare disease
Experts have warned that a ‘no deal’ Brexit will result in the exclusion of the UK from the 24 European Reference Networks (ERNs) that were established to improve the care of patients bearing the lifelong burden of a rare disease, which require highly specialised diagnosis and treatment.
Rare diseases are rare, and experts are rarer still. European Reference Networks were set up because no single country has the expertise or resources to cover all of the known rare diseases, which number in the thousands ....

United Kingdom , Allison Watson , Mark Tischkowitz , Marc Tischkowitz , University Of Cambridge , European Reference Networks , European Reference Network , European Reference Networks Erns , Reference Networks , Clinical Practice Guidelines , Reference Network , ஒன்றுபட்டது கிஂக்டம் , அல்லிசன் வாட்சன் , பல்கலைக்கழகம் ஆஃப் கேம்பிரிட்ஜ் , ஐரோப்பிய குறிப்பு நெட்வொர்க்குகள் , ஐரோப்பிய குறிப்பு வலைப்பின்னல் , குறிப்பு நெட்வொர்க்குகள் , மருத்துவ ப்ர்யாக்டீஸ் வழிகாட்டுதல்கள் , குறிப்பு வலைப்பின்னல் ,