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13 March
2007
Dear
Members
I hope
you are well and looking forward to attending the 12th
European NF meeting in Lisbon from 26 to 29 April 2007.
Please
accept this letter as formal notification that there will be a General
Meeting of NF Europe, commencing at 5pm on Thursday 26 April 2007 in the
conference venue of the 12th European NF meeting. A draft
Agenda is attached.
The
day-to-day Board
Since
the last general meeting in Gothenburg, members of your day-to-day Board
have met 4 times:
St Niklaas and France (history)
Dublin (planning for the future)
UK (financial)
The
attendees funded themselves to participate in these meetings.
Financial situation of NF Europe
The
reality is that NF Europe has no money. With the exception of Italy ANF,
no members have paid their membership fees since Gothenburg in July
2005. (Belgium, Ireland and UK did not pay in 2006 because of having to
pay their own costs to attend day-to-day board meetings as mentioned
above). The only outgoings from the bank account have been bank charges.
How can we run an effective organisation without any funds?
Public
awareness campaign
We have
a template poster ready, together with a press release in English which
you can each translate into your language and attach your association’s
contact details. You would each need to find a printer (they may be
prepared to produce posters in return for advertising on the poster).
We
suggest that this public awareness campaign now goes ahead in May 2008
but we need commitment from all members of NF Europe.
We will
bring a sample poster and press release to Lisbon for discussion at our
meeting.
Website
The
website is currently being updated.. Please let me have your revisions
as soon as possible – especially those members who have changed their
emails, addresses, telephone numbers, representatives, etc and have not
let me know.
We
suggest that each lay group sends in their news about twice a year, for
inclusion on the website. The responsibility for this rests with you. We
also plan to ask our medical advisors to host the collation of research
information in rotation, so that NF Europe’s website also includes the
latest research news.
Summer
Camp
The next
international summer camp for NF kids will be held from 9 to 20 July
2007 in Istanbul, Turkey. Plans are well advanced now and we will bring
more details to the meeting in Lisbon.
Roadbook
for future scientific meetings
We have
produced a draft roadbook which sets out how to organise a European
meeting:
Considerations
Timings
Planning details
Finance
Etc, etc.
We hope
this will make it easier for future organisers of European NF Meetings.
The
future of NF Europe
Little
has been achieved since Gothenburg. Lack of time and lack of money and
lack of support are the three main reasons. The day-to-day board cannot
take things forward without your help. You have an obligation to
contribute to the success of NF Europe.
I hope
you will consider all these issues and come to the general meeting in
Lisbon with some constructive suggestions that will lead to NF Europe
becoming more effective.
Looking
forward to seeing you in Lisbon.
Kind
regards
Clare
Webb
President
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