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Medical terms / Genetic Alliance UK / Rare disease / Chronic / Health care / National Health Service / Medical home / Palliative care / Health / Medicine / Healthcare


RD-UK-WalesSurvey-Report-front-cover-1
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Document Date: 2013-02-25 09:15:14

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File Size: 1,60 MB

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City

Edinburgh / /

Company

RDUK / Rare Disease UK / /

Continent

Europe / /

Country

Northern Ireland / United Kingdom / Scotland / Wales / /

Event

Person Communication and Meetings / /

IndustryTerm

9 Rare Disease Care / health services / 25 Rare Disease Care / care for people with rare diseases / therapy services / care for people with rare disease / Rare Disease Care / 5 Rare Disease Care / long-term healthcare / healthcare system / transplant services / treatment for people with rare diseases / /

MedicalCondition

muscular dystrophy / Alström syndrome / rare diseases / rare cancers / childhood cancers / Huntington’s disease / few rare disease / Tuberous Sclerosis / Motor Neurone Disease / cystic fibrosis / Primary Immune Deficiency / rare condition Creutzfeld-Jakob Disease / MND / Creutzfeld-Jakob Disease / Often rare diseases / cancer / disease / CJD / rare disease / Biedl Bardet syndrome / Many rare diseases / rare disorders / Parkinson’s disease / diseases / /

Organization

Genetic Alliance UK / Genetic Alliance UK Rare Disease UK / Council of the European Union / National CJD Research & Surveillance Unit / European Commission / European Union / Department of Health / NHS / /

Person

Alastair Kent / Laura Gilbert / Brenda Kent / /

Position

care advisors / designated care coordinator / clinical nurse / coordinator / Director / clinical nurse specialist / named care coordinator / Executive / specialist nurse / nurse / worker / Chair / care advisor / Contents Chair / care coordinator / OBE Chair / /

Technology

GPS / /

URL

www.geneticalliance.org.uk/docs/policy/genetic-alliance-uk-rare-disease-plan-response.pdf / http /

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