miércoles, 29 de mayo de 2013




Comprueba las últimas noticias y eventos de nuestros miembros
Marche Maladies Rares

FEDERG Official Lauch 7th june

" After a long silence, here we are again moving forward with the FEDERG initiative (we are all confronted with inadequacy between load and human resource).

In fact you first should know that FEDERG has already started its activities (as an informal grouping of RGD associations). FEDERG has been nominated as member of the Ethycal Advisory Board of a European Research project EUREnOmics mostly on renal genetic diseases and also patient representatives in another European project called RareDisease-Connect linked to the previous one.

The task now is to proceed with the official settlement and launching of FEDERG, delays have occurred in the preparation for logistic reasons but together with AIRG-Belgium we are ready now, and we propose:

1) to establish the legal seat in Brussels and more specifically at the Clinique St Luc, where our strong supporters Prs Pirson and Devuyst are nephrologists, and also where AIRG-Belgium has its legal seat.
2) to hold the first General Assembly on Friday 7th of June 14h00-17h00 at the Clinique St Luc, Brussels (mark your calendar and book your seat)
3) to hold the first board meeting during the same slot of time.

Note that although for the constituting general assembly we feel it is very important to be present physically, we will also provide facilities to allow participating at the assembly from a remote place through telephone.

The legal statutes of FEDERG in French have been developed according to the Belgium law, by Mr. Etienne Malherbe from AIRG-Belgium, on the basis of the elements we have discussed in 2012. I am attaching these statutes together with an English version. Despite the high care we have put in it, I am sure there are some improvements to be made, particularly on English terms. Don’t hesitate to send your comments for suggesting changes and improving the text.
These legal statutes will have to be further completed with by-laws and that will be one of the first tasks of the elected Board of Directors.
At the constituting general assembly on June 7th, the representatives will have to decide mainly about:
1. 1) Agrid of annual fees per type of members
2. 2) The FEDERG project document
3. 3) A Program of activities for 2013/2014.
4. 4) The number of directors in the board to reflect the diversity of the general assembly composition.

And then the representatives will have to elect the directors.

It is important that the representatives at the GA received prior endorsement of the organization they belong to.

Early May we should start circulating preliminary ideas on the Grid of fees, and if needed be a revised version of the project document and of the program of activities. I am attaching to this mail the latest version of the project as we discussed it last year, nothing is yet carved in stone, so suggestions are welcome.

Dear friends of FEDERG, one year ago we hold our first preliminary meeting in Paris, now it is time to concretize our idea of a federation.

Looking forward to interact with you for this great Endeavour."
Best regards

Daniel Renault

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