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First meeting of European Patient Advocacy Group in the newly established Euroean Reference Network for Rare Renal diseases (ERKnet)

FEDERG  renewed its visions and plans for the next years. 15 different patient groups being part of the members‘ assembly that took place in Amsterdam on 3rd of March 2017 defined gols and developped strategies to expand to less represented countries. Patient representatives from Rumania, Poland and Slovakia being ready to become new members of the network. New important topics will be: connecting patients with rare or genetic renal diseases even if they don’t have a support group in their country access to medication for patients in all European countries,
support efforts to connect national patient groups to European networks in FEDERG.
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EPag ERKNet has been launched
In a meeting organised by FEDERG on 4th of March 2017 all workgroups of the European Patient Advocacy Group in the newly established European Reference Network for Rare Renal diseases (ERKnet) could be started. Representatives of 25 different European patient groups set up their suggestions, plans and goals for their participation in the network. Healthcare pathways were prepared and discussed and topics fort he next meetings set. The official start of all ERNs will be on 9th of March in Vilnius / Litauen.

 

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