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ICF(M)A Newsletter

Herman Weggen


Volume 4: December 01

Dear Friends and Members

It is with pride that I can now announce to you that we have again made progress with our merger!

Constitution of CFW
In November the executives of ICF(M)A discussed the first draft version of the constitution of CFW and we agreed upon the major lines of this new constitution. We will make some amendments and it is our intention to distribute this draft constitution for CFW at the beginning of the new coming year 2002.

New Logo
We are also making our new logo for CFW which will be a totally different one. We hope you will be surprised about our creative actions. During our annual meeting in Genoa, in June 2002 the abovementioned will be discussed and we are looking forward to meeting those of you who will be able to attend.

Our program for the Genoa conference follows this report. We will have our Annual Business meeting on June 19, 2002.

On June 20, 2002 there will be a lay program. The conference committee for this day has been working hard to set up a program for this day. If you do have any suggestions and or questions you can always contact Teresa Jacklin: tjacklin@care4free.net (chairperson of the organization committee) or Gina Steenkamer: info@vgww.org (secretary of the organization committee).

Vision and mission
Our vice president Enrique Silver, prepared a vision and mission paper. We want to present and discuss this (together with the strategic plan for CFW) in Genoa.

Fundraising
At this moment we trying to contact companies for fundraising. As you are probably aware, this requires a lot of work and effort. We therefore looked for someone who could give us some support. We got into contact with Mr. Jan In 't Veld who is willing to help us with this fundraising activity.

Fundraising is of course necessary and once our vision and mission paper is more professional we can improve our presentation to the outside world.

European branch of ICF(M)A
A working group with representatives from 5 European CF associations (UK, Belgium, Czech Republic, Germany, Sweden) gathered at a meeting in Stockholm October 13-14 2001. This was a result of discussions at the ABM in Vienna.

The instructions were to prepare for a European CF Association. The working group decided that the region should be 'greater Europe'. A 'to do' list was prepared for the next, essential meeting in the beginning of May in Praque. After this planned meeting, information and proposals about the planned founding of 'CF Europe' will be available and distributed before the meeting in Genoa.

WHO
Prof. George Davidson wrote a comment to the WHO on the last version of the Essential Drugs list.

The new guidelines to measure health are published by the WHO. (www.who.int/icf/icftemplate.cfm) It is called the International Classification of Functioning, Disability and Health. ICF(M)A will scrutinize the text to see how CF can be classified.

On 11 -12 April 2002 there will be a WHO meeting in Toronto on collaborating strategy in the development of medical genetic services in countries. On behalf of ICF(M)A
Prof. J. Dodge and Herman Weggen plan to attend this meeting.

Grants
Twice a year applications can be received for our grant program. Please inform those who might be interested. You can find further information on our website www.icfma.org

We need your help to approach more (so called lost) countries to stimulate applications.

Thank you
By means of this newsletter I also want to thank you all for your co-operation during the past year and I hope that with our continued perseverance we, one day, will be successful.


Warm regards.
Herman Weggen
President of the ICF(M)A

Any questions, opinions or suggestions about the items in this newsletter? Please let us know. We appreciate your comments. Email: weggen@tref.nl