Please listen to the voice of 12,000 patients.

 

 

The European Organisation for Rare Diseases, EURORDIS, is a patient-driven alliance of patient organisations and individuals active in the field of rare diseases.

Eurordis’ mission is to build a strong pan-European community of patient organisations and people living with rare diseases, to be their voice at the European level, and – directly or indirectly – to fight against the impact of rare diseases on their lives.

pills | médicaments | medicaciones | farmaci | medications | Medikationen | - 3.4 kbstudent | étudiant | estudiante | allievo | estudante | Kursteilnehmer | - 4.5 kbCells affected by a rare disease | cellules| células | cellule | pilhas | Zellen - 4.3 kb

To this end, Eurordis undertakes activities on behalf of its members, notably in favour of:

-  Empowering rare disease patient groups 
-  Advocating rare diseases as a public health issue 
-  Raising public rare disease awareness, and also that of national and international institutions 
-  Improving access to information, treatment, care, and support for people living with rare diseases 
-  Encouraging good practices in relation to these 
-  Promoting scientific and clinical rare disease research 
-  Developing rare disease treatments and orphan drugs 
-  Improving quality of life through patient support, social, welfare and educational services


Author: Eurordis
Editor: Eurordis
Photos: pills © www.freeimages.co.uk ; Cells affected by multiple myeloma (Mott cell) © University of Virginia Health System ; student © United Kingdom Literacy Association

06/2007

 

 

DOWNLOAD the entire book (pdf):

 

 

Rare diseases are often chronic, progressive, degenerative, life-threatening and disabling diseases. Many rare disease patients are denied their right to the highest attainable standard of health and continue to advocate their need to overcome common obstacles. Through the publication of this book, “The Voice of 12,000 Patients”, the patient’s perspective can go beyond patients’ anecdotes and be additionally represented by the analysis of data collected through theEurordisCare2 and EurordisCare3 surveys. These surveys investigated patients’ experiences and expectations regarding access to diagnosis and to health services, for a variety of significantly relevant rare diseases across Europe.   SOURCE

DOWNLOAD the book by section (pdf):

DOWNLOADIntroduction DOWNLOADMethods 
DOWNLOADResults of EurordisCare2 DOWNLOADResults of EurordisCare3 
Results by Disease Results by country
DOWNLOADAlternating hemiplegia 
DOWNLOADAniridia 
DOWNLOADAtaxia 
DOWNLOADChromosome 11 disorders 
DOWNLOADCrohn’s disease 
DOWNLOADCystic Fibrosis 
DOWNLOADDuchenne Muscular Dystrophy 
DOWNLOADEhlers Danlos Syndrome 
DOWNLOADEpidermolysis bullosa 
DOWNLOADFragile X syndrome 
DOWNLOADHuntington’s disease
DOWNLOADMarfan syndrome 
DOWNLOADMyasthenia gravis 
DOWNLOADOsteogenesis imperfecta 
DOWNLOADPrader Willi syndrome 
DOWNLOADPulmonary arterial hypertension 
DOWNLOADTuberous sclerosis 
DOWNLOADWilliams Syndrome 
 

 

DOWNLOADAustria
DOWNLOADBelgium
DOWNLOADCroatia
DOWNLOADCyprus
DOWNLOADCzeck Republic
DOWNLOADDenmark
DOWNLOADFinland
DOWNLOADFrance
DOWNLOADGermany
DOWNLOADGreece
DOWNLOADHungary
DOWNLOADIreland
DOWNLOADItaly
DOWNLOAD Luxembourg
DOWNLOADNetherlands
DOWNLOADNorway
DOWNLOADPoland
DOWNLOADPortugal
DOWNLOADRomania
DOWNLOADSlovakia
DOWNLOADSpain
DOWNLOADSweden
DOWNLOADSwitzerland
DOWNLOADUK
DOWNLOADConclusions DOWNLOADAppendix

 

 

DOWNLOAD the Executive Summary

 

02/2009

 

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