our historical timeline
back to the future
2012 In Review: 29 member organisations from 20 European countries. ADHD-Europe is currently supported only by member organisations and initiatives, with no funding from commercial organisations. The member organisations are: Verein ADAPT, Austria; Centrum ZitStil, TDA/H-Belgique, ADHD-ASC-Dyslexia Family Resources and Aandacht ADHD Volwassen, Belgium (Flemish and English groups); Awakening – Organisation for Understanding ADHD, Croatia; ADD-ADHD, Cyprus; ADHD-Foreningen, Denmark; ADHD-Association, Finland; Hypersupers TDA/H, France; ADHS-Deutschland and BVAD, Germany; O Kyriakos and ADHD Hellas, Greece; ADHD- Hungary; HADD and INCADDS, Ireland; AIFA Onlus, Italy; ADANA Foundation and FEAADAH, Spain; Treffpunkt ADHS, Luxembourg; ADHD Family Support Group, Malta; Balans and Impuls, the Netherlands; ADHD-Norge, Norway; Riksförbundet, Sweden; Hiperaktivite, Turkey; and ADDISS, UK.
February 2012: Biennial training programme is launched to help members improve their advocacy and other skills relevant to non-governmental organisations
March 2011: We continued to distribute the Declaration throughout 2010, gathering signatures at conferences, workshops, meetings, seminars and courses where healthcare professionals are participating. The declaration is available in the following languages: French, German, Italian and Spanish. We will continue to lobby for endorsements.
2011 In Review: The present board consists of members from Germany, Belgium, Spain, Greece, Ireland and the Netherlands. We have expanded our Research Committee which now con- sists of members from Belgium, Ireland and Austria. Our Scientific Advisory board members come from Germany, the Netherlands, Ireland, Spain, Greece, Norway, Hungary, Turkey and two from Sweden.
2010-2011: Organising our First Conference, The Many Faces of ADHD
March 2010: ADHD-Europe was represented at a two day meeting in Amsterdam of the newly formed European ADHD Awareness Taskforce, joined by representatives of two ADHD-Europe member countries, Spain and Denmark. Other members of this group included leading researchers, educationalists, therapists and medical doctors from the UK, Germany and Sweden. At this first meeting, it was decided that we would develop four online manuals for teachers and parents to help work together thus, improve parent-teacher relationships and further to better understand ADHD and related conditions.
11 September 2010, the Taskforce met again, this time in Brussels, to finalise the content of the manuals. The members of the Taskforce were given complete ownership of what was to be put into the manuals, which was by now being called the ADHD Toolkit. We realized at the end of this meeting that this project that some of us had initially approached with hesitancy had the potential to transform how ADHD children are accommodated in schools across Europe and how parents and teachers interact in an effort to make the school experience a positive one for children with ADHD.
November 2010: Lunchtime meeting in the European Parliament on the topic: The Impact of ADHD in Europe to which re presentatives from the local ADHD organisations, ADHD AS Dyslexia Family Resources and TDA/H Belgique were also invited. This provided us with the platform that we had been striving for in a different way up to that time. A Press Release about the issues discussed was issued by Nessa Childers, MEP Ireland.
September 2009: Submission of the application for matching funds from EAHC for a Conference in Brussels, of which we were not chosen to benefit from the initiative
2009 In Review: ADHD-Europe was represented at the thematic conference organised by DG SANCO and the Ministry of Health in Stockholm on September 29 and 30, 2009: “Youth and Education: Promotion of Mental Health and Well-being of Children and Young People – Making it Happen.” This was an interesting event as there were key people from organisations active in the Mental Health field as well as from education, many of whom shared the ADHD-Europe philosophy as regards ADHD. One of the presentations included a section about ADHD, which provided an opportunity to showcase ADHD-Europe’s activities. However, although a written contribution was made on behalf of ADHD-Europe to the Background Document to this thematic conference, ADHD was only mentioned once in the document and this in a negative way arguing that children who spend a lot of time playing computer games are more likely than others to be diagnosed with AD/HD, which was disheartening.
May 2011: The ADHD Europe survey ‘Differences, Problems and Progress’ is updated and extended from the 2009 version.
February 2011: First ADHD-Europe international conference is held. This takes place in Rome, in collaboration with the Italian parent organisation AIFA Onlus, under the title ‘The many faces of ADHD’. Future conferences will be held biennially in European countries that have particularly low public awareness of ADHD.
22 September 2009: A European declaration on the validity of ADHD as a disorder is launched. Scientists and healthcare professionals can sign the declaration. ADHD-Europe had a platform at a conference organised by HyperSupers, A Comparative Re- view of European Practices in the Field of ADHD, which was held in the Ministry of Health in Paris, a very well organized and high profile event featuring top speakers from France and elsewhere; taking her place proudly among them was our Vice-President from Spain, who spoke pas- sionately about our mission and introduced the Declaration about ADHD, inviting the participating health professionals to read and sign it.
ADHD-Europe’s efforts were once again highlighted at the Multilingual ADHD Conference organised by the English-speaking, Dutch-speaking and French- speaking ADHD organisations in Belgium when Dr. Geoff Kewley, Consultant Neuro-Paediatrician and Founder/ Director of the Learning Assessment & Neurocare Centre, UK designed his presentation around this document.
No doubt the same happened when the Declaration was launched in Luxembourg, Ireland, Croatia, Malta, Spain, Hungary, Germany, the Netherlands, Denmark and everywhere ADHD Awareness Week activities were taking place during that week, all of which were showcased on our website.
August-September, 2009: Creating & Launching a Declaration about ADHD: Once that flurry of activity was over, it was time to start drafting the ADHD-Europe Declaration about ADHD. The decision to draft our own European Declaration about ADHD had been taken at the AGM in Hungary in response to a plea for advice on the lack of recognition of ADHD in Italy to the General Assembly. We planned to ask leading European health professionals to sign: including psychiatrists, paediatricians, neuro-paediatricians, psychologists, neuro-psychologists, scientists, counselors, therapists, nursing staff, etc. The final draft was ready for distribution in early September 2009 and was sent out to each of our members to be distributed across Europe.
It was heartening to see what happened in Italy after this document was sent out. Each day brought a stream of signed endorsements from all corners of the country onto the desks of the team in Belgium and this continued until the end of Awareness Week and beyond. It made us feel that it was the correct action to take in response to the problem that was presented to us by our colleague from Italy that day in Hungary.
Of course, other countries responded too, notably the UK who were not yet members; with time all began responding: Spain, France, Ireland, Hungary, Croatia, Luxembourg, Poland, Germany, Greece… but none could match the momentum shown by the Italian healthcare professionals who understood the value of such a document in coun- tering negative press reports prolific in Italy at that time.
Following an invitation for ADHD-Europe to the High Level Meeting in the EU in June 2008, and especially fol lowing the launch of the Survey in Vienna, more and more invitations arrived on the ADHD-Europe desk for mental health events. Not surprisingly, an invitation arrived from the World Federation of Mental Health, which was holding a conference in Athens at the end of August 2009, and our board member in Athens represented ADHD-Europe at this event.
May 13 2009: Mental Health & Gender: Key Issues for the European Pact for Mental Health and Well-being ADHD-Europe was represented at another thematic conference held in Brussels: Mental Health & Gender: Key Issues for the European Pact for Mental Health and Well-being, which provided an opportunity to highlight the lack of research funded on ADHD in girls and women.
May 2009: First ADHD-Europe survey is published entitled Differences, Problems and Progress. This is a comprehensive source of information on provision for ADHD in European countries, encompassing professional training, diagnosis and treatment, availability of medications, cost and reimbursement of treatment, and access and inclusion measures.
May 2009: Writing our First Proposal for EU Funds Once the Survey was with the printers, the team in Belgium had no time to rest on their laurels because there was another deadline to meet, the Proposal to EAHC, which turned out to be even more time consuming than the sur- vey. This work began in the ADHD-Europe registered of- fice in Merelbeke on a lazy May day when others were enjoying a taste of summer. There was no time for such pleasures for the two stalwarts ensconced in the ADHD- Europe office that day, or, for that matter, for our President in Germany, who was at the other end of the telephone or modem to give us advice and encouragement as we charted the new waters of this highly complex task. The questions asked forced us to look at every little aspect of organising a conference for which we hoped to get matching funds from the European Commission; the problem was that we did not have a substantial budget so we had to curb our plans accordingly. We could only plan an event for which ADHD-Europe would be able to cover at least 50% of the overall cost with the proceeds from the event, mainly con- sisting of entrance fees. This was no mean feat and, as it turned out, one of our main obstacles to achieving our goal, but more of that later.
April 2009: During the year of the legalization process, we built up contacts, met new members, developed new work plans, so we could start the Annual General Meeting in Budapest in with the news that ADHD-Europe had been finally legalized. The organisation has already got members from 27 organisations in 19 countries across Europe, and we experience the reality of sharing best practices and knowledge each time we meet, going home afterwards with a lot of inspiration, courage and enthusiasm. There is nothing ‘humble’ about us anymore as we forge ahead with our plans to make Europe a better place for children, adolescents and adults affected by AD/HD.
April 2009: Decisions Taken at the AGM in Budapest When the survey findings were presented at the AGM in 2009, everyone agreed that we should publish the Survey and schedule its launch to coincide with the World Federation of ADHD Congress in Vienna on May 23 where ADHD-Europe had an information table during the main Congress and would take centre stage at a post Congress Patient’s Workshop where the findings from the Congress were to be summarised in both English and German.
We also decided that the board would apply for matching funds for an ADHD-Europe conference in September 2010 from the Executive Agency for Health and Consumers (EAHC) Initiative whose aim was to promote-health, especially the reduction of health inequalities, and generation and dissemination of health information. The deadline was May 20, 2009; we were to find out that the application process was nothing if not complex.
The members of the Executive Board had two urgent dead lines to meet as they left Hungary on April 19, but at least they did not overlap. The first one was the survey, which once the draft was handed over by the Research Officer, was to occupy most of their waking hours until it was sent to the President in Germany to prepare it for printing at the end of the first week of May. Thus began a feverish month of late nights and early mornings to transform the research document into a sophisticated booklet we hoped would do ADHD-Europe proud. When we were finally satisfied with the result, it was sent to the printers in Germany and we were able to breathe a sigh of relief knowing that all going well we would meet our deadline.
It turned out to be well worth the effort; those of us who attended the Patient’s Day on May 24 heard news from Vienna that warmed our hearts– there was a big buzz about the survey: more than 500 copies brought on the day it was launched. At the Patient’s Day workshops on Saturday, everyone was still basking in ADHD-Europe’s first 15 minutes of fame thanks to the excellent work of the Research Officer.
February & March 2009: EU Initiatives: In the European Parliament and Commission, a number of initiatives were passed that were of interest to ADHD- Europe in that more focus was put on mental health in ge neral and especially in the workplace. These included the European Parliament Resolution of February 19, 2009 on mental health, The Eurobarometer on Mental Health and Well-Being of Children and Young People and part of the European Transparency Initiative (03/09), an invitation from the European Commission to register as an Interest Representative, which we passed on to all of ADHD-Europe member organisations in Europe at the AGM in 2009. Of further interest to ADHD-Europe was the adoption at the Comité Permanent Des Medicins Européens (CPME) Board meeting in Prague on March 14, 2009 of the White Paper on Mental Health in Workplace Settings, “Fit and Healthy at Work” (CPME 2009/024 final EN/FR).
All these initiatives arose from the thematic conferences being organised during the implementation phase of The European Pact for Health and Well Being under the Second Mental Health Action Plan 2008-13, and opened up new opportunities for ADHD-Europe to influence European policymakers in accordance with our constitutional objectives.
October 2008, we then launched our website, www.adhdeurope.eu.
July & August 2008: Creating a Website: Once this had been accomplished, it was time to begin addressing the action list drawn up at the AGM in April. Top of the list was the ADHD-Europe website and no time was wasted getting the web designer into the office in Merelbeke to collaborate with us on this. Much to the surprise of our members, it was ready to go online by the time the school holidays were over that summer.
July 2008: Designing the Surveys: Our Research Officer had already begun designing questionnaires to gather information for the surveys she was planning to conduct with the member organisations throughout Europe. The Board decided that this survey should include information on approaches to the diagnosis and treatment in each of the countries surveyed, including the availability and cost of medication and the extent to which teachers were knowledgeable about ADHD and willing to make accommodations for children thus afflicted. The plan at that stage was to present the findings at the AGM in 2009. It was a challenging project, but one that she was very well trained to do.
June 2008: ADHD-Europe at Launch of the European Pact for Health & Wellbeing: In the meantime, we had been invited to participate in the High Level EU Conference on June 12 & 13, 2008, which was organised by the Directorate General for Health (DG SANCO) to present the European Pact for Health and Well Being. One of our team members in Brussels represented ADHD-Europe at this event and had discussions with key policy makers involved with the Pact who advised us to write a rationale for ADHD being mentioned in this document, listing the items we would like to see included and include information about ADHD on the Mental Health Portal for Best Practice, all of which we accomplished during that summer.
Networking in Germany: At the same time, our President was busy in Germany making contacts that would be beneficial for ADHD-Europe in the long term, which included negotiating with the World Federation of ADHD who were planning their Second Congress about ADHD throughout the life span, which was to be held in Vienna from 22 to 24 May of the following year. As a result an ADHD-Europe Patient’s Day was organised on the final day of the event in which speakers summarised the new research presented at the congress.
May – June 2008: Making it Legal: Following some years of informal umbrella meetings, the first official ADHD-Europe board was elected at the Annual General Meeting (AGM) in Belgium in April 2008 when most of the members present signed the Articles of Association that we had spent the day discussing, thus heralding the birth of ADHD-Europe as a ‘soon-to-be’-legal entity.
What it really meant was that the elected board members could go ahead and do what was needed to set the legal process in motion. At the time, there was much excitement and we innocently thought that it would be over within the month. However, things did not run quite as smoothly as we had anticipated; there were numerous setbacks along the way, such as the need to get signed proxies from each of our member organisations to enable our secretary to sign on everyone’s behalf when the time was ripe, and collec- ting the copies of the statutes from each of the organisations at a time when people were preparing to go on their summer holidays, not a mean feat.
However, the day did indeed come when all the documents needed had been sourced and the team in Belgium could sign on the dotted line under the vigilant guidance of our legal representative; needless to say, we had a camera with us to record this moment for posterity. The dossier was ready to be submitted to the Courts in Flanders, the Dutch- speaking region of Belgium, and there was nothing to do but wait.
April 2008, we were far enough ahead to be able to have our members vote on this new ADHD-Europe Constitution. It was an historical meeting where the Articles of Association were discussed and 12 organisations became the founding members of ADHD-Europe. A new Board was elected and the signal to work was given. The official seat was chosen to be in Belgium.
September 2007: First annual European ADHD Awareness week takes place. Expanding year on year, ADHD organisations arrange seminars, conferences and fun events across Europe.
April 2007, we met again in Brussels determined to put an action plan in place that would lead to ADHD-Europe being legalized. During that meeting, we voted in an Interim Board for one year with specific instructions to write statutes to use as a dialogue about what exactly we wanted to be written into our Constitution. This agenda was pushed forward aggressively by our President, the result being that this hastily put-together Interim Board accomplished more than what was requested of it.
In 2006 we had our next meeting to work on the process of building up the organisation. At the same time, we finalised our contribution to the Green Paper on Mental Health, launched on the 14th of October 2005; this contribution was the first concrete result of our collaboration.
May 2006: ADHD-Europe submission to the EU Green Paper on Mental Health‘Towards a Strategy for Mental Health in the European Union’is made, describing the burden of conservative attitudes, poor professional training, stigma and lack of provision for treatment on people with ADHD and their families, this argued that Europe should develop its very own specific mental health initiatives for ADHD.
links to sources
Publications, Green Papers
All ADHD-Europe Publications
ADHD voices in Europe
Find a patient organisation in your EU country: Our members are listed per country here. If you would like to know about our Board Members please look here.
Join us as a member? Should you wish to join ADHD Europe please read about the membership criteria here
Do you want to attend our AGM? We invite you to read more about our Annual General Meetings here. All members are welcome to attend our AGM. Looking for a patient organisation event? Member Events around EU are here.
What do you have planned in October? Patient & Member Organisations will be holding events and activities to raise awareness. If you are holding an event anywhere in Europe please let us know and we would be very happy to help publicise your event. Contact us with your information or get in touch with us.
Awareness Photo’s & Video’s: Enjoy watching the video’s here and Photographs from our network of ADHD organisations can be seen here.