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About EDA

What is the European Dyslexia Association?

The European Dyslexia Association is a European non-governmental umbrella organisation for national and regional associations of people with dyslexia and other specific learning differences, children’s parents, professionals and researchers. It was founded and legally established under Belgium law in 1987 in Brussels as an international non-profit association by representatives of ten national dyslexia associations. It is the platform and the Voice of the people with dyslexia and so called ‘Specific Learning Difficulties’ in Europe.

The EDA currently has regional and national Effective Members in 21 EU countries plus Switzerland, San Marino and Norway and Adherent member organisations; in all 40 member organisations in 24 European countries (List of members):

The EDA is a Non-Governmental Organisation (NGO) in official relation with UNESCO; a Full Member of the European Disability Forum (EDF); and has Consultative Status with the International Federation of Library Associations (IFLA).

According to substantiated scientific estimates, the group of European Citizens with dyslexia and specific learning differences encompasses between 5 and 12 percent of the population, navigating through life in a largely non-‘dys’ friendly world. Dyslexia is the most widespread specific learning difference, making the acquiring and using of reading, spelling and writing skills and other communication-related cultural abilities difficult (commonly known as ‘DYS-differences’). Quoting academic surveys, other learning differences as dysphasia, dyscalculia, dyspraxia and attention deficit disorder exist commonly with dyslexia; known as ‘DYS-differences’, (concluded under ‘DYS’). A same person can also accumulate some of these differences, dyslexia being associated to dysphasia, dyspraxia, dyscalculia or attention deficit.


 It is generally (and indisputably) known and documented that the cultural abilities of reading and writing are among the most important prerequisites in our society for individual cultural, social and economic development and success. Furthermore, across Europe, the diversity of languages and the multilingual demands, socio-cultural backgrounds as well as educational opportunity, have a significant influence on the manifestation of difficulties and life-chances for children, adolescents and adults with DYS differences.

Without sufficient knowledge in this area, failure in school, employment, general communication impairments and social segregation are common threats, with well-known consequences in the lives of those affected, their family members and society.

There have been significant advances in procedures that enable earlier identification of dyslexia, determine which interventions work best and then to develop appropriate support for people with dyslexia in schools as well as the workplace.

Despite that, dyslexia presents concerns and challenges for millions of children and adults across Europe. These challenges require major changes for governments, policymakers and organisations to improve attitudes, legislation and positive practice in education and the workplace.

Researchers acknowledge that there are many possible causes of each single or accumulated DYS differences, including genetics.

There is no relationship between a person's level of intelligence, individual effort or socio-economic position and the presence of dyslexia and /or a “DYS” difference.

At its conferences, meetings and the yearly EDA Community Summer Seminars in San Marino the EDA provides a platform for the most recent scientific findings in this area, best-practice interventions in the field of education and extra-curricular advancement as well as the advancement of affected individuals from all parts of the European Union.

The main aims of EDA is to inform people, politicians, policy makers, trade and commerce unions and pressure groups in Europe about the necessity of supporting those who are dyslexic or DYS in a positive way, in order to avoid negative consequences caused by inappropriate education and training, low self-esteem and under-achievement which may lead to social exclusion.

With its wide angle of activities it facilitates the exchange of information and good practice through international networking and lobbying. In partnership with its member organisations, the EDA will challenge prejudice and ignorance to ensure that people with dyslexia and DYS are empowered to reach their full potential.

 


 

How we function

The activities of the EDA are organised and directed by volunteers. A Board of Directors is elected at a General Assembly of the members held every year. The Directors´ mandate is non-remunerative. The Board meets at least three times a year.

Effective membership is restricted to non-profit making dyslexia associations only. Other organisations with a scientific or social interest in dyslexia can apply for adherent membership. However, before acquiring Effective membership, non-profit making dyslexia associations applying for membership are accepted as adherent members only, but after two years they can apply for effective membership.


 

Our vision

Every child and adult with dyslexia (and/or DYS-differences) in Europe has the right to access and to receive appropriate support and opportunity to achieve their full potential in education, training, employment and life.

Our mission

The European Dyslexia Association is a European umbrella organisation for national and regional associations of people with dyslexia (and other DYS-differences), children’s parents and professionals and academic researchers. It facilitates the exchange of information and good practice through international networking and lobbying. In partnership with its member organisations, the EDA will challenge prejudice and ignorance to ensure that people with dyslexia are empowered to reach their full potential.

No Matter Which Country – 

No Matter Which Language –

Dyslexia Is Everywhere

The European Dyslexia Association - International Organisation for Specific Learning Disabilities AISBL

History and goals

How we began...

 

Marcel Seynave, first president of the EDA
Marcel Seynave, first president of the EDA

The European Dyslexia Association was the brain child of Monsieur Marcel Seynave (Belgium), who put into practice the idea of forming a European- wide association for dyslexia so that all countries in Europe could agree as to what ‘dyslexia’ meant and to speak with one voice on behalf of all dyslexic children and adults.

In this he was ably supported by his wife, Madame Liliane Seynave.

The first discussions

In 1986 the association, APEDA* Belgique, invited Dr. Albert Galaburda, the Head of Research at the Harvard Medical School in Boston, Massachussetts in America to participate in a conference on developmental dyslexia in Brussels. The conference was organised for the benefit of its members and the scientific world. APEDA-France and the German association, Bundesverband Legasthenie (BVL), took the opportunity to invite Dr Galaburda to make another conference for their respective organisations at a later date.

Marcel Seynave was invited to attend the congress of BVL in Hannover as the President of APEDA-Belgique and he travelled with Dr Galaburda. During their conversations, Dr Galaburda was quite surprised at the diversity of approaches in Europe towards dyslexia which he believed were influenced by the Anglo-Saxon theories of Piaget. Dr Galaburda then suggested the idea of creating an association to agree a common approach for the benefit of dyslexics in Europe.

Two years previously in 1984, there had been a study organised in England by the British Dyslexia Association with delegates from Belgium, France and Germany at which the same idea had been germinated; but at that time nothing was done!

At the congress in Hannover, there was a reunion of the contacts made in Britain between the delegates from France, United Kingdom, The Netherlands, Belgium and Sweden. Marcel proposed he should take the first necessary steps for the creation of a European Association for dyslexia.

Living in Brussels, it was easy for him to establish contacts with the European Community. Mr Daunt, the Director at that time of the Bureau of Action for Handicapped Persons, showed great interest in the initiative. Marcel obtained from the European Commission a financial subvention to cover the entire costs of preparation and organisation of the first assembly.

EDA was founded

The members of the first board
Our first board members

European Dyslexia Association’, an international association under Belgian law was founded at Brussels on 18 October 1987. Twenty-five representatives from dyslexia associations in the following eight countries set the course for the future of the Association:

  • * l’Association de Parents d’Enfants en Difficulte d’Apprentissage for Belgium
  • Association for Children & Adults with Learning Difficulties for Ireland
  • British Dyslexia Association for United Kingdom
  • Bundesverband Legasthenie for Germany
  • Landsforeningen For Ordblindesagen for Denmark
  • Norsk Dysleksiforbund for Norway
  • Balans/Stichting Dyslexie for The Netherlands
  • Union Nationale France Dyslexie for France

The first EDA board consisted of Marcel Seynave (Belgium), Dr Lisa Dummer-Smoch (Germany), Gyda Skat Nielsen (Denmark ), Aaldert van der Horst (The Netherlands), Turid GammelsrØd (Norway), Robin Salter (United Kingdom) and Dr Anne-Marie Montarnal (France)

In December 1988, the European Commission officially recognised the ‘European Dyslexia Association (EDA)’ as a Non-Governmental Organisation representing dyslexia and its specific learning difficulties.


 Past and present board members of the EDA

The purpose in producing this list of Past (and Present) Board Members is to remind everyone just how representative across Europe the European Dyslexia Association has been since 1987, and to provide a record for the future.

(This list is not complete yet, and are to be updated with titles and years)

NameCountryTitlePeriod
Marcel Seynave Belgium 1st President 1987 - 1993,1987 - 1997
Turid Gammelsrød Norway Joint 1st Vice-President 1987 - 1991
Alan Sayles Ireland Joint 2nd Vice-President
4th President
1987 - 1997, 1999 - 2006, 2000 - 2006
Lisa Dummer-Smoch Germany 4th President  
Aaldert van der Horst The Netherlands    
Anne-Marie Montarnal France    
Robin Salter United Kingdom    
Gyda Skat Nielsen Denmark    
Marta Bogdanowicz Poland    
Andras Mate Hungary    
Katrin Sellin Germany    
Peter Havas Hungary    
Nada Lovric Croatia    
Berit Bogetvedt  Norway    
Koos Henneman The Netherlands    
Eleni Grammaticos Belgium    
HerbertGunther  Germany    
André Poncelet Belgium    
Michael Kalmar SR Austria    
Suzanne Bertschinger Switzerland    
Karin Brünger Germany    
Gavin Reid      
Teresia Hegedüs Hungary    
Steve Alexander United Kingdom    
Carina Carlsson Sweden    
Marija Kavkler Slovenia    
Maria Potamitis Cyprus    
Raymond Claes Luxembourg    
Lars Sander Denmark    
Kate Saunders United Kingdom    
Giannis Karagiannakis  Greece    
Rudy Vandevoorde Belgium    
Kate Saunders United Kingdom    
Christina Sczigiel Germany    
Giacomo Stella Italy    
Pernilla Söderberg Sweden    
Bengt-Erik Johansson Sweden    

The EDA today

The European Dyslexia Association (EDA for short) is a European non-governmental umbrella organisation for national and regional associations of people with dyslexia and other specific learning differences, children’s parents, professionals and researchers. It was founded and legally established under Belgium law in 1987 in Brussels as an international non-profit association by representatives of ten national dyslexia associations. It is the platform and the Voice of the people with dyslexia and so called ‘Specific Learning Difficulties’ in Europe.

The EDA currently has 24 regional and national Effective Members in 21 EU countries plus Switzerland and Norway and 13 Adherent member organisations; in all 37 member organisations in 25 European countries: Austria, Belgium, Cyprus, Czech Republic, Denmark, Finland, France, Germany, Greece, Ireland, Italy, Lithuania, Luxembourg, North Cyprus, Malta, the Netherlands, Norway, Poland, Portugal, San Marino, Slovenia, Spain, Sweden, Switzerland and the United Kingdom.

The EDA is a Non-Governmental Organisation (NGO) in official relation with UNESCO; a Full Member of the European Disability Forum (EDF); and has Consultative Status with the International Federation of Library Associations (IFLA).

At its conferences, meetings and the yearly EDA Community Summer School in San Marino the EDA provides a platform for the most recent scientific findings in this area, best-practice interventions in the field of education and extra-curricular advancement as well as the advancement of affected individuals from all parts of the European Union.

The EDA is particularly interested in supporting the creation and development of national and regional organisations for people with dyslexia across the whole of Europe.


 

Goals for the European Dyslexia Association

The main goals of EDA is to inform people, politicians, policy makers, trade and commerce unions and pressure groups in Europe about the necessity of supporting those who are dyslexic or DYS in a positive way, in order to avoid negative consequences caused by inappropriate education and training, low self-esteem and under-achievement which may lead to social exclusion.

With its wide angle of activities it facilitates the exchange of information and good practice through international networking and lobbying. In partnership with its member organisations, the EDA will challenge prejudice and ignorance to ensure that people with dyslexia and DYS are empowered to reach their full potential.

European DYS-organisations already work together in a Europe-wide network as far as it concerns common targets towards European Institutions. The EDA has positive experiences from working together with EDF and would encourage other DYS organisations to join the EDF to enhance the influence on the European Institutions. This would facilitate exchange of information and good practice through international networking and lobbying in partnership with member organisations, governmental bodies and professionals working within the different ‘dys’ communities.

A critical impact consist in the circumstance that for the part of the population with dyslexia it is very difficult to consume written information like books in normal print/format. In fact these persons are reading/print impaired. Therefore our members and beneficiaries are interested in the availability of published works in accessible formats, such as large print, Daisy, audio and braille, which can be read and enjoyed by all visually impaired and other reading disabled persons.

The EDA is closely working together with the World Blind Union and the European Blind lobbying the Copyright Committee (SCCR) of the World Intellectual Property Organisation (WIPO) to formulate such a Treaty on Copyright and the Visually Impaired. The target is to ensure that every child and adult with Dyslexia, Dysphasia, Dyspraxia, Dyscalculia or Attention Deficit Disorder, etc has the right to access and to receive appropriate identification, support and opportunity to achieve their full potential in education, training, employment and all aspects of life. 

Subcategories

Membership

A category of articles about membership to EDA

EDA board

A category of articles about the EDA board