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The Voice of 12,000 Patients ... Experiences and Expectations of Rare Disease Patients on Diagnosis and Care in Europe
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. To go beyond patients’ anecdotes and investigate experience-based opinions in a quantitative way, the EurordisCare2 and EurordisCare3 surveys were conducted. 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. The results are reported in this book. "The Voice of 12,000 Patients" is intended as an information and advocacy tool for patients, patient organisations, health professionals, and health authorities.
Available in electronic format or in bound paperback format.
To order printed copies, read more > Charges may apply on bulk orders. Inquire for more information.
Languages: English
Eurordis Presentation Leaflet
Eurordis’ mission, main activities and achievements are detailed in this leaflet, as well as the European institutions and platforms in which Eurordis has an involvement, and a listing of some of the many rare diseases represented by the organisation. This double-sided folded leaflet is available in print format only.
Other languages: See also the French, Spanish, German, Italian or Portuguese sections of our website for translations in those languages.
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Fact sheet series
A series of fact sheets designed to give an overview of the issues affecting people living with a rare disease and to inform about specific areas of interest. The fact sheets introduce the work being done by Eurordis in the field of rare diseases in Europe and give sources of information. These A5 2-page leaflets are available in print or pdf format.
POLKA: Patients’ Consensus on Preferred Policy Scenarii for Rare Diseases
A 7-page brochure presents the POLKA project (Patients’ Consensus on Preferred Policy Scenarii for Rare Diseases) being conducted until Sept. 2011. The project fosters the opinion of patient representatives on future European policies for rare diseases, or collects their views on existing ones. Entertaining sessions called "PlayDecide sessions" familiarise patient representatives with complex scientific issues.
Rare Disease Patient Solidarity (Rapsody) ... new services aimed at improving the daily lives of people living with a rare disease
A 6-page brochure presents the Rare Disease Patient Solidarity project (Rapsody) offering new services to improve the quality of care, information and social services for people living with a rare disease. Project objectives are introduced by patient representatives, each involved in different aspects of Rapsody: European help lines for rare diseases, therapeutic recreation programmes and educating teachers to accommodate rare disease patients in schools, national centres of reference and European networks of reference, respite services, and a pan European survey of patient expectations.
On-line Communities: Mailing Lists for People Affected by a Rare Disease
This pamphlet describes our service for people affected by rare diseases in Europe that enables exchange of information and reduces patient isolation. A mailing list is an e-mail communication method for a group of people involved with a particular disease.
Other languages: See also the French section of our website for a translation in that language.
EuroBioBank European Network of DNA Cell and Tissue Banks for Rare Diseases
Two pamphlets describe the structure, purpose and activities of EuroBioBank. One pamphlet contains information for patients, and the second is intended for BioBankers and the scientific community.
Other languages: Information about EuroBioBank is available on the EuroBioBank website, www.eurobiobank.org, in French, German, Spanish, Italian, Hungarian and Slovenian.
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Outstanding Legal and Ethical Issues on Biobanks ... an overview of biobank regulations in selected EU member states
This booklet provides updated information on legal and ethical issues relating to the collection, distribution and use of biological samples from patients with rare diseases throughout Europe. The review is published by Instituto de Salud Carlos III and funded by Eurobiobank and the Spanish rare diseases network REpIER, with the aim of boosting European research on these diseases in a framework of respect for citizen’s rights. This publication is a first step towards harmonized legislation on human biomaterials in Europe.
Available in electronic format or in bound paperback format at no charge.
The annual activity report produced by Eurordis outlines a brief mission statement and describes the organisational setup today. The report lists and develops in detail Eurordis’ priority objectives and achievements for the previous year and objectives for the year ahead. These include project development, committee and conference activity, forum involvement, the implementation of audit recommendations and staff appointments.
Rare Diseases: Understanding this Public Health Priority ... a founding text by Eurordis
To clarify the concept of rare diseases as a public health issue, Eurordis produced a short document covering all aspects of rare diseases: definition of the concepts involved; characteristics and specificities of rare diseases; statistics; description of the social, medical and financial impact of rare diseases on the lives of patients and their families; need for raising public awareness; need for appropriate funding and for appropriate health systems and professional care; and the absolute necessity to empower patients to emerge from their isolation.
Eurordis encourages rare disease activists to make use of this document, particularly at the national level, in work promoting rare diseases as a public health priority.
Other languages: See also the French, Spanish, German or Italian sections of our website for translations in those languages.
Eurordis Charter for Clinical Trials in Rare Diseases
A charter for collaboration between the various stakeholders (sponsors, patient organisations, patients and investigators) involved in clinical trials for rare diseases has been developed by Eurordis through consultation. The aim of the charter is to improve the quality of clinical research in rare diseases and to ensure a transparent and effective dialogue between interested parties.
Prevalence of Rare Diseases: A Bibliographic Survey
This report provides an estimate of the prevalence of rare diseases in Europe. It is based on a systematic survey of several data sources including medical websites, literature and expert reports. This joint publication by Orphanet and Eurordis is part of the Orphanet Reports series covering topics relevant to all rare diseases. The document is updated frequently, a new report replacing the previous version.
Languages: See also the French, Spanish, Italian, Portuguese German sections of our website for translations in those languages.
Report on the European Conference on Rare Diseases 2007
The European Conference on Rare Diseases 2007 Lisbon (ECRD) was the 4th in a series of health and research policy conferences organised every two years by Eurordis. On the 27th and 28th of November, more than 400 people from 35 countries shared their views and proposed actions for rare diseases.
The conference entitled “Patients at the heart of rare diseases policy development” enabled patients, healthcare professionals, policy makers and industry representatives to interact with decision-makers from the European Commission and Member States. They debated key policies and actions to improve the lives of people affected by rare diseases.
Report on the European Worshop on Centres of Expertise and Reference Networks for Rare Diseases
On 12-13 July 2007, the capital of the Czech Republic, Prague, saw 80 patient representatives, healthcare professionals and European policy makers from 13 countries get together to move forward in the establishment of centres of expertise and European reference networks for rare diseases. This Prague workshop, which left much room for discussion and dialogue, was a milestone for the Rare Disease Patient Solidarity Project (name code: RAPSODY).
Report on the European Conference on Rare Diseases 2005 ...an overview of rare diseases
The report on the European Conference on Rare Diseases Luxembourg 2005 is an overview of the situation of rare disease patients in Europe in 2005. Topics such as diagnosis, epidemiology and coding of rare diseases, research and clinical trials, treatment and care, orphan drugs, public health issues and national policies, training and information for patients and carers, patient networks and patients’ rights are covered in depth.
Available in electronic format (4 languages) or in bound paperback format (English only - 20 € to cover postage).
Languages: See also the French, Spanish and German sections of our website for translations in those languages.
Rare Disease Info: Guidelines & Manual ...a guide to creating and developing information services for rare disease patients
This set of instructional materials is designed to help patient groups provide quality information about rare diseases and to improve access to information for people living with rare diseases.
The Guidelines document summarises the best approaches for providing information. The Manual in three parts gives guidance on how to deliver information, including hands-on advice on topics such as giving interviews to the press and publishing a website.
Over 400 patient groups contributed to the development of these publications through surveys, interviews and workshops, sharing their experiences and expertise in providing information about rare diseases, shaping the principles and examples of best practice described in the Guidelines and Manual.
Published: March 2004 Length: Guidelines: 4 pp.; Manual: 70 pp.
Languages: Guidelines: See also the French, Spanish, German, Italian and Portuguese sections of our website for translations of the Guidelines in those languages. Manual: also available in Spanish
Eurordis Survey Program
Eurordis regularly conducts surveys on topics affecting the rare disease community. For published survey results, please see the Eurordis Survey Program section of this website.
Eurordis Declaration on Centres of Expertise
For more information please download the Declaration on Centres of Expertise: ENGDEITESFR
Position Papers
A position paper describes an organisation’s recommendations concerning a political issue, legislation or a European directive. In the context of its advocacy work in favour of rare diseases, Eurordis regularly publishes position papers on rare disease and orphan drug topics.
See the Position Paper page of this website for a full list of our position papers
Eurordis Plateforme Maladies Rares 102, rue Didot 75014 Paris France
All publications are free of charge, except as noted.
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For copyright information, and our policies on reprinting or distributing these publications, please consult the conditions of use section of this website.
The Voice of 12,000 Patients
Eurordis Presentation Leaflet 
Eurordis: A Brief Presentation 
A series of fact sheets designed to give an overview of the issues affecting people living with a rare disease and to inform about specific areas of interest. The fact sheets introduce the work being done by Eurordis in the field of rare diseases in Europe and give sources of information. These A5 2-page leaflets are available in print or pdf format. 
POLKA: Patients’ Consensus on Preferred Policy Scenarii for Rare Diseases 
Rare Disease Patient Solidarity (Rapsody)
On-line Communities: Mailing Lists for People Affected by a Rare Disease 
EuroBioBank 
Outstanding Legal and Ethical Issues on Biobanks 
Eurordis Annual Activity Report 
Rare Diseases: Understanding this Public Health Priority 
A charter for collaboration between the various stakeholders (sponsors, patient organisations, patients and investigators) involved in clinical trials for rare diseases has been developed by Eurordis through consultation. The aim of the charter is to improve the quality of clinical research in rare diseases and to ensure a transparent and effective dialogue between interested parties. 
Prevalence of Rare Diseases: A Bibliographic Survey 
Report on the European Conference on Rare Diseases 2007 
Report on the European Worshop on Centres of Expertise and Reference Networks for Rare Diseases 
Report on the European Conference on Rare Diseases 2005
Rare Disease Info: Guidelines & Manual
Guidelines: See also the French, Spanish, German, Italian and Portuguese sections of our website for translations of the Guidelines in those languages. 
Position Papers 
eurordis.org