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Summary of Board meeting held on August 6, 2022 in #Milan.

The Board Members met for the first time in person after more than two years of pandemic during which all meetings took place in visual. The Associations Members of Dysnet were invited to participate via videocall where the following topics were discussed:

EU Transparency Register: DysNet has now full access to this important Register https://ec.europa.eu/transparencyre.../public/homePage.do.... We consider this as a sign of trust vis-à-vis our Community granting access to easier contacts and activities managed at EU level related to disability

EDF-European Disability Forum: DysNet is officially Associate Member of EDF https://www.edf-feph.org/.../european-dysmelia-reference.../ . This allows us to get important weekly updated information upon the activities ruled by EU Parliament and competent commissions related to disability

Potential re-location of DysNet from Sweden to Belgium (Brussels). The possibility to pen an office in Brussels is under evaluation thanks also to the precious support of a Team of Attorneys of White & Case LLP in Brussels with whom DysNet’s Board is having active contacts.

Special thanks to Mr. Pietro Barbieri, Member of EESC-European Economic and Social Committee and President of the Thematic Group on disability rights in Europe who accepted out invitation to take part in the meeting. Mr. Barbieri aligned us about the activities EU is performing through the competent commissions and assured us his cooperation. Further contacts will follow and a meeting will soon be fixed in Brussels to extend our knowledge of various operational organisms of EU Parliament and to discuss about any pragmatic synergic initiatives.

Next DysNet’s AGM-Annual General Meeting will be held in October 26 at 10.00 am CET. A link for videocall as well as the agenda will be sent to all Member Associations in due time.

Please do not hesitate to get in touch with us in case you need clarifications and/or details.

The Board of DysNet

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DysNet is the global network connecting anyone who is personally or professionally affected by congenital limb deficiency.  The site is inclusive, communicative and collaborative.  This is the place where you can find information, contribute your own thoughts and ideas and join the conversation.

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Dysmelia is the generic term for all types of congenital limb differences - genetic, environmentally-induced or caused by an isolated fetal development problem.  It is a rare condition with varying degrees and types of congenital limb damage and affects about 5 people in every 10 000.

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We are developing a network of experts - the Dysmelia Expert Forum - who can help answer any questions you might have about dysmelia or living with limb loss.  When you join our community, you will get the opportunity to have your medical or practical questions answered by experts in the field.

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Help us to develop a strong global voice for dysmelia.  As an individual you can register on the DysNet website - the place to access information - and the multi-lingual DysNet RareConnect community - a safe, moderated space to connect with your peers.  As an organisation, you can join DysNet.

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