RSE Meeting Limburg 28th April 2007
Present:

  • UNITED KINGDOM: Yvonne Milne, Ronnie Jaffa
  • MALTA: Denis Galea
  • FRANCE: Martine Gaudy, Gerard Nguyen
  • SERBIA: Bojana Mihailovic
  • BELGIUM: Anna Vermeulen, Johan Delaere
  • GERMANY: Angela Abel, Monika Mittag
  • NORWAY: Hanne Blom-Bakke
  • SLOVENIA: Tanja Zajc
  • ITALY: Oliviero & Lucia Dell'Oro
  • SWEDEN: Ulf Hanell
Apologies from:

  • FINLAND: Jorma Syvajarvi
  • NETHERLANDS: Axel Wiertz
  • CZECH REPUBLIC: Blanca Muellerova
  • SLOVAKIA: Maria & Richard Simaljak
  • AUSTRIA: Andreas Thaller & Stella Peckary
  • SWITZERLAND: Tony & Joanna Snyder
  • LATVIA: Inese Belicka
  • SPAIN: Valencia and Catalan RS Asssociations
1. Welcome and introductions by Yvonne Milne, President

2. Minutes of RSE Meeting, Gdansk 2nd September 2006

The minutes were approved with an exception raised by Gerard regarding point 7 page 3 of the minutes whereby it is noted that France are willing to allocate a significant budget towards the cost of this project and not specifically 50% of the costs as noted in the minutes.

3. Matters arising
  • 3. 1. Contacts with other countries


    • Yvonne had made contact with both Romania and Ukraine but we now seem to have lost touch with these contacts. It was noted with pleasure that we have re-established contact with associations in Spain Johan has made contact with a Rett mother from Kiev who also has a contact in Ukraine and is willing to communicate and translate information. Hanne noted that she has a contact in Denmark. Bojana also noted that she is in contact with both Montenegro and Bosnia. Action - all new contact details are to be forwarded to Denis to include in contacts list.

  • 3. 2. Inter-Rett study


    • Martine gave a brief re progress on this database, highlighting the opportunity for families to give in their details. The Inter-Rett study is now easily accessible via the RSE website.

  • 3. 3. Statutes


    • It was noted that we still need to get some more countries signed in. New members need to send signed statutes to Denis.

  • 3. 4. EU Funding


    • This was being actioned by Jorma but it seems to be very difficult to achieve progress on this front. Gerard noted that RSE has been accepted as only one of three associations to be part of the European Agency of Medicine.

  • 3. 5. Copies of Dr. Kerr's DVD


    • It seems that not all member countries had received a copy of this DVD. Ronnie generously offered to make and send out copies, so anyone interested in receiving a copy should communicate with Denis who will inform Ronnie accordingly.

4. Research Report progress

Oliviero and Gerard are working on this and so far they have a record of eight research projects in Italy, three in the UK and three in France.
The idea is to have all more aware of research projects going on in each country, avoid duplication of work and possibly collaborate on research projects especially when it comes to apply for funding.
Ronnie pointed out that if we were going to publicise research projects on websites etc, it is important that researchers are made fully aware of this.
Oliviero prepared a DVD to be distributed to the members.

Yvonne received an email from Dr. Laurent Villard who is a member of the scientific advisory board of the French Rett syndrome association, requesting our support to organise a research network for Rett syndrome at European level. The network will incorporate ten teams from five countries - Spain, Italy, France, Germany and Israel, and will be called EURO-RETT.
The aims of the network are:
  • building an integrated European RS database
  • improving genotype/phenotype correlations in RS
  • understanding chromatin modifications and identifying target genes in RS
  • understanding neuronal dysfunction in RS
  • developing new therapeutic approaches for RS

They would like to take advantage of the E-RARE call for application to ask the participating European countries to fund this network. It was agreed that Yvonne will write a letter to Dr. Villard confirming our support so that he could include it with his application.

5. Report from scientific conference Italy 19/20th April 2007

Gerard reported that the meeting was very scientific. It was very good and important for scientists attending but was geared less towards the needs of families and carers.
Angus Clark (geneticist) attended from the UK and there were also three representatives from Germany.

6. RS World Conference 2008 – Paris

Gerard announced that a 6th World Rett Syndrome Conference will be held in Paris. (date now set for 10-13 October 2008)
This will be a great opportunity to review and have an update on all topics that relate to Rett Syndrome.
Bengt Hagberg (Sweden) will be the President of Honour, Philippe Evrard (France) will be the President of the Scientific committee and Gerard Nguyen will be the President of the Organising committee.
Further communication on the world conference will be sent to all in due course.
Oliviero noted that Italy had already proposed to organise the 2008 RSE meeting in Milan or Verona but in view of the world congress planned for 2008, he will be asking his board in Italy to postpone the Italy meeting to 2009.

7. RSE Website

Johan presented a brief report giving us a latest update on the website contacts etc. (copy of report attached). Johan also told us of a recent new contact he made for Ukraine and will also try and make contact with someone in the Republic of Ireland. Any new contacts should be forwarded to Johan and Denis.

8. RSE Statute Review

Due to the world congress in 2008, the general assembly agreed that the executive board members should remain the same, to be reviewed at the next annual meeting.

9. Financial Report

Ulf presented the financial report for the period 01/01/2006 - 31/12/2006 showing a final balance in our bank account of euros 4670 as at year end. These accounts have also been audited & an audit certificate was presented. Ulf reminded all that those members who would like to remain members but cannot afford to pay the annual membership fee, are to write to him stating this. There was a discussion re placing a copy of our financial statements on our website and in the end it was decided that the executive board should re-discuss and decide on this.

10. Date of next meeting

The next meeting of the membership of RSE would take place to coincide with the World Congress in Paris, October 2008.