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Minutes of the FEWS meeting of 13 October 2007Venue: Slovenská Zdravotnicka Univerzita Medical Centre, Limbová 12, Kramare 831 01 Bratislava The Meeting was opened at 14h10. 1. Presence in attendanceThe following associations were represented at the meeting:
· Williams Beuren Syndroom vzw (Belgium), represented by Paul Pyck · Association de Syndrome de Williams de France, representated by Christian Castillon · Autour de Williams (France), represented by Pauline Delpierre · Bundesverband William-Beuren Syndrom (Germany), represented by Horst Romm · Magyar Williams Szindróma Társaság (Hungary), represented by Gábor Pogány · Norsk Forening for Williams' Syndrom (Norway), represented by Arne Fedje · Asociatia williams syndrome (Romania), represented by Camelia Lazar-Livieratou and her husband Marius · Spoločnosti Williamsovho syndrómu (Slovakia), represented by Katarina Jariabkova and Vladimir Bzdúch · Williams SyndromForeningen I Sverige (Sweden), represented by Stefan Blomberg
There were apologies for absence of:
· Williams Syndrome Association of Ireland, delegate by Ann Breen · Asociacion Sindrome Williams (Spain), delegate Jose M. Delgado · The Williams Syndrom Foundation (UK), delegate Susie Cooper
The president of the Slovakian association Nadežda Sadloňová and a relative assisted during the meeting. 2. Approval of the minutes of last meetingThe minutes of the last meeting were approved without comments. 3. Research and scientific coordinationA) Presented by Pauline Delpierre: The 2008 AdW conference is planned to be held from the 4th to the 6th of April 2008 at Euro Disney in Paris. The first day will be open for all interested, but is mostly aimed to professionals and clinicians and will contain a lot of research presentations. The language this first day will be French and English. Translation from French to English will be arranged. The second day will contain different workshops where families can meet with clinicians and professionals. The language will only be French this day. The third day will be a free day on the Euro Disney facilities. Decided: Pauline Delpierre sends a presentation of the conference, in English to all members of FEWS.
B) Pauline Delpierre informed about the French call for research projects. The announced 35,000€ can possibly be raised to 70,000€. The call expires at the 1st November 2007.
C) The EurordisCare3 survey has been carried out in Slovakia, Belgium, Rumania, France, Germany, Hungary and Sweden. A partial presentation of the results were carried out in Prague the 12th to 13th of August. The final results will be presented in Lisbon the 27th to 28th of November this year. According to Eurordis statistics the WS prevalence is said to be 1,33 in 10000 living births. Discussion about this figure and how valid it is were carried out.
D) Discussion about so called Reference centres, which is a topic that Eurordis is exploring right now. Hors Romm had participated in a German national meeting on the topic and reported about it. It was stated that presently there is no agreement or definition of what a reference centre is. Furthermore, there are very different conditions in different European countries concerning the organisation of the actual national health care system. Thus, FEWS cannot have a definite policy about Reference centres.
E) Discussion about the Williams Syndrome Questionnaire. It was first carried out in Italy 2004. Then it was translated and carried out in Hungary and later on in Belgium and Spain. Previously UK, Sweden and France have stated that they are planning to carry it out too. At present day, none of these countries have done the survey. Discussion about what use FEWS and its member countries can have of the survey. It was stated that through the survey it would be collected knowledge about the different conditions persons with Williams Syndrome live in and what kind of problems they meet, in different ages. This information could be useful for families, especially when one recently has got the diagnosis. It was stated that the problem is that it would be needed to run advance statistics to validate the results and to take into consideration the different conditions in the FEWS countries. Decided: 1) Ask the WSA in Italy (Cintia) about the detailed statistical analysis. 2) Every FEWS member looks for professional candidates to run the statistics and to analyse the survey. 4. Fund-raisingThere have been no initiatives to get funds for FEWS during the last year. We agreed that fund-raising for FEWS is only useful and realistic if we need funds for a special project, not to get funds for the normal operational activities. It was stated that sponsoring and fund raising is generally more of a national concern. It was agreed that FEWS will pay the travel and lodging expenses of 1 delegate or another person of one of the FEWS members attending European Conferences related to rare diseases. This person officially represents the FEWS on such conference. This means he/she presents the FEWS organisation in one or the other way (presentation, poster…) and writes a report on the conference, which is made available to all the members. If several candidates apply, the board decides who represents the FEWS. At the Eurordis conference in Lisbon 27th to 28th of November 2007 Gábor Pogány from Hungary and Camelia Lazar-Livieratou from Romania will represent FEWS, but do so on there own expenses. 5. Publicity and awarenessHorst will update the FEWS flyer with some small changes based on the updated FEWS address list. Gabor will update the website with the latest version of the flyer. Two years ago the plan was launched to update a CDROM, created by the Italian association, with other languages and some information on FEWS. The original CDROM is already in 3 languages: Italian, English and Spanish. Last year some countries (Germany, France, Belgium) showed their intent to ad their language to the CDROM. Cintia said to take care of the translations. Paul will contact Cintia again to understand what is the current situation and how we can proceed. Can other languages be added and under what conditions? It was stated that FEWS possibly has to find new solutions to get the translations done and to print new updated CD-roms. If so, every FEWS member have to check if they can find a supplier that can manage the task and the costs needed. Gábor Pogány informed about a Eurordis campaign “A rare day for rare diseases” on the 29th of February 2008. He encourages FEWS members to join the campaign. Actions: Horst will adapt the FEWS flyer, Gabor to publish the flyer on the FEWS website. Cintia to inform us about the status and conditions of the CDROM project 6. Communications / websiteDiscussion about why the communication between the FEWS delegates slowed down during the spring. It is stated that the communication needs to be vitalised. There was a discussion on the use of mailing lists and forums on the Internet. Eurordis offers a WS-mail list through their website. Some delegates replied this implies a lot of work of the administrators (at least 2) and a mailing list is language dependent; therefore it would not be used much. Camelia replied such mailing list is interesting for countries without any association or group involved with WS. It was stated that there already are four known WS-mail lists running: an English in the US, a German in Germany, a French in France, and a Hungarian in Hungary. Decided: 1) Not to accept the offer from Eurordis as the moderation of the list will demand too much time to manage. 2) To put web-links to the US, German, French and Hungarian WS-mail list on FEWS’ homepage and to encourage FEWS’ members to inform its own members about these WS-mail lists. 7. Camps and holidaysA) Stefan Blomberg reported about the Swedish FEWS Camp “Sound and Action” which was carried out the 30th of July to the 5th of August 2007. The camp had 70 WS participants and leaders from 12 countries (Sweden, Norway, Finland, Denmark, Ireland, UK, Belgium, Germany, France, Spain, Hungary and Slovakia). The camp was arranged at, and together with, Furuboda Folk High School and Conference centre. It was mainly carried out as a music camp. Professional music trainers and teachers trained the participants in musical abilities and musical development. The camp also arranged concerts, karaoke and a disco for the participants. The camp was supported by the EU programme Youth in Action, handled by the Swedish Youth Board, through a grant of 60,000€. The camp was also financially supported by Furuboda itself and by the Fund of the Swedish Crone Princess Victoria. Feed back was collected from the FEWS members and it was stated that the camp had an excellent atmosphere, that it was well organised and that it managed to produce an excellent group feeling among the participants. It was stated, however, that there could have been a little bit more free time in the schedule to make it possible to share experiences e.g. among the leaders. B) Horst Romm informed about the planned FEWS camp in Germany the 30th of June to the 9th of July 2008. The camp will be called “Get the Rhythm of Nature and Adventure”. It will be open for participants of a maximum of 12 countries and FEWS’ members will be prioritised. Every country can send four participants and at least two leaders. The leaders must be prepared to actively participate in carrying out the programme and to prepare their own program items. The deadline for application is set to the 31st of December 2007. Decided: Horst Romm will send a detailed presentation about the Camp to all members of FEWS. C) Christian Castillon informed about the plans of a French FEWS camp in 2009. Presently however, he doesn’t have a team to manage a camp. He will try to find a team, but is not so hopeful. The countries present around the table were asked about their commitment to organise a camp: in none of the other countries not yet involved, a team could be established to organise a camp. Decided: FEWS to challenge UK, Ireland, Italy and Spain to consider arranging a FEWS camp 2009. 8. Membership and financial statusAAnn sent the financial report for the period since last meeting (20/10/2006) until this meeting (13/10/2007) as shown below.
Belgium, Germany, Hungary, Italy, Ireland, Slovakia, Spain, Sweden and UK paid their 2007 fee. According to Ann’s report also France - Autour de Williams (AdW) paid and France – Fédération française du syndrome de Williams et Beuren (FFSWB), Norway and Romania did not pay. FFSWB and Romania told they have paid. AdW is not sure they have paid. Maybe there is a misinterpretation in the originator of the French fee. Norway and Italy did not pay their 2006 fee. Gábor Pogány reported that Finland, through Jari-Matti Vuorio, asks for membership in FEWS. However, Finland is not a legal association. Gábor Pogány will contact Jari-Matti and encourage him to contact Paul Pyck to solve the practical and juridical implications of the Finnish membership. Camelia Lazar-Livieratou informed about new conditions for the Greek association. Gábor Pogány will contact the Greek association to invite them to FEWS membership. Stefan Blomberg informed about the Danish association that has a new chairman. Paul Pyck will contact the Danish association to invite them to FEWS membership. Actions: Ann to check which French associate on paid and whether the Romanian association paid. Those that did not pay yet their 2007 fee are asked to pay it. Italy and Norway are asked to pay their 2006 fee. Ann to send an invoice to all for the 2008 fee by December 1st. Gábor to contact Jari-Matti and the Greek association. Paul to contact the Danish association. 9. Any other businessHorst and Gabor asked everyone to send articles of the local activities to all for publishing them in national newsletters and on the FEWS website. Pauline Delpierre informed about and showed a WS 2008 calendar that the AdW has produced in collaboration with an art bureau and a professional photographer. The aim is fundraising and the calendar is sold by AdW’s members and other associates. Last year (2006 calendar) AdW received about 30,000€ through this activity. Paul asked to send all changes of member associations to him as FEWS secretary. FEWS must have an updated information for all its members. This includes changes in the constitution (send text changes and publishing), changes in the board (send all coordinates of the new board members including, name, address, identity card nr, birth day and place) and changes in the FEWS delegate (send a document where the legally responsible(s) give full power to the new delegate within FEWS). Actions: all to send articles of local activities to all for publishing. All (when applicable) to send changes in the member association to Paul. 10. Date and location of the next meetingAutour de Williams proposed to organise the next meeting in Paris. Everyone agreed on this proposal. The meeting date will be Saturday 11 October 2008.
The Meeting was closed at 19h20.
Stefan Blomberg and Paul Pyck
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