EDSA 30th anniversary 1987-2017.

Dr. Juan Perera, director of ASNIMO (Asociacion Sindrome de Down de Baleares) and one of the founders of EDSA, presented this speech on EDSA 30th anniversary at the AGA 2017 in Dublin:

EDSA was founded in 1987 in response to the need to establish a common line for all the European organisations working for DS.
The idea of creating the European association emerged from various professionals in the international sphere who were giving lectures on DS.
Initially the proposal was seconded by the national associations of countries such as France, the UK, Germany, Belgium, Denmark and Spain. Subsequently representations from the rest of the European countries gradually joined us, eventually shaping the association as we know it today.

Photograph, taken at the Town Hall of Verviers, of the founding members (France) showing the association’s first board of management
This is the photograph, at the Town Hall of Verviers, of the founding members who made up the association’s first board of management: CARLOS PICCENNA (Italy) was its first President, MARIA VICTORIA TRONCOSO (Spain) was Vice-president and RICHARD BONJEAN (Belgium) General Secretary and Treasurer.

EDSA was created to support people with DS in all countries in EUROPE and especially to care for their health, their education and training, their integration into society and their adaptation to work. The first action taken by EDSA was to try to organise the different initiatives of the member organisations. To do this we called a General Assembly designed to define the bylaws that would govern our activity.
Once the organisational structure was defined, the next process was the dissemination of EDSA’s activities with the publication of “THE ANSWER TO A CHALLENGE” (1990) which we transferred to all the national associations and presented at the different congresses in the European sphere in the year 1991. In that same year, we carried out more dissemination at the congresses organised by the NDSS (National Down Syndrome Society) in San Diego (California).

In 1991 the “EDSA Scientific Council” was created with the following objectives:

a) To publish a new issue of the “EDSA Newsletter” every 6 months.

b) To organise a Seminar on specific aspects of DS every 6 months in different countries.

c) To create a group of scientists who are specialists in different DS issues.

In June 1991 the first issue of the EDSA Newsletter was published, designed to disseminate scientific issues of special interest for the health and education of people with DS.
In 1992 the “EDSA Science Advisory Board” was created. Its members were scientists and experts from many countries in Europe, with the aim of facilitating contact with experts in DS for the Associations.

By the year 1993 EDSA was fully functioning and this was an especially fruitful year for our association: Two Administration Council Meetings were held, the Board of Management of EDSA was renewed with the appointment of a new President, Augusto Bosio (Italy) and the first meeting of the Scientific Council was held in Montpellier (France). Moreover, EDSA organised the “International Symposium on Specificity in Down Syndrome” in Mallorca and participated in the International Congress in Orlando (USA).

In 1994 EDSA requested its incorporation in the EDF (European Disability Forum) with the idea of representing the interests of people with DS in the body for the representation of people with disability before the European authorities. It also organised the “International Conference on Cognitive Development in Down’s Syndrome” at Portsmouth University (England) and the “Journées Nationales sur La Trisomie 21. Fait 21 et G.E.I.S.T 21” in Nimes (France).

In 1995 EDSA continued with its scientific and dissemination work by organising the “Third European Down Syndrome Conference” in Dublin (Ireland) and the “3rd International Symposium on Down Syndrome” in Palma de Mallorca with the subject “Psychology of DS.”.

In 1996 EDSA participated at various meetings held in Vancouver, Dublin and Cancun, represented by R. Bonjean and J. Perera, to form part of the International Committee that subsequently approved the constitution of the IDSF, today called DSI (Down Syndrome International), which is the World Down Syndrome Federation.

In 1997, in Madrid (Spain), EDSA held the “6th World Congress on Down’s Syndrome” which was attended by 2,400 people from 63 countries worldwide and which resulted in publication of the book “Down Syndrome: A Review of Current Knowledge”, coordinated by Jean Rondal, Juan Perera and Lynn Nadel, and with versions in Spanish, English, French and German.

In 1998 EDSA prepared a document titled “The EDSA Essentials” which summarised the main lines of the organisation:

  1. Identity Document.
  2. Healthcare Guidelines for People with Down Syndrome.
  3. People with Down Syndrome: Orientation for Families.

In the same year EDSA also published its Ethical Code.

In 1999, EDSA was admitted as a member of the “European Disability Forum” in Brussels (EDF). This meant the official recognition of the “Specificity of Down syndrome” in the international sphere and opened the doors for us to the EU’s fifth Directorate General (responsible for people with disability).

In 2000, the EDSA meeting was held in San Marino with the calling of new elections and a new Board of Directors was composed presided over by Dr Juan Perera (Spain).

In 2001 the organisation’s lines of functioning were redefined. The EDSA BOARD MEETING in Luxembourg approved the new “EDSA IDENTITY DOCUMENT” and the EDSA BOARD MEETING held in Palma de Mallorca approved the document “EDSA IS ALIVE”. The EDSA MEMBER LIST was also updated (JUNE 2001) and there was continuation of the publication of the EDSA Newsletter.

In 2002, the “2nd International Congress” was organised in San Marino with the theme: “The Adult with DS” and the opportunity was taken to hold the EDSA BOARD MEETING. Also that same year, the “Conference on Medical Issues in DS” was organized in Bielefeld (Germany).

In 2003 the Meeting was held in Luxembourg with the theme: “School integration: a European challenge” and also the EDSA BOARD MEETING was held to approve the New EDSA Bylaws, drawn up by Monique Randel … and to present the 8th World Down Syndrome Congress which was held in Singapore in November of that same year and presided over by Balbir Singh. From this same year you have very broad and detailed information on the principles, objectives, achievements, meetings and publications of EDSA on the Website “EDSA European Down Syndrome Association”, a very well organised page that offers a vision of a solid EUROPEAN ASSOCIATION, with clear objectives and competent parents and professionals.

I wish you all the energy to continue fighting for people with Down Syndrome in Europe, with clear ideas, with perseverance and convinced that every year we are capable of further improving our objectives and ensuring that our children and students enjoy their daily activities and have a healthy and responsible life ahead of them.