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IN PARIS FOR EURORDIS
DysNet’s Chairman Claudio Pirola took part in CEF (Conference of European Federations) organized by EURORDIS in Paris last October 16-17,...
tobiasarndt
Oct 21, 20241 min read
15 views
3 comments
DysNets AGM August 1st at 3pm CEST
DYSNET’S GENERAL ASSEMBLY – Don’t miss the important appointments DYSNET organized for August 1during the General Assembly which will...
tobiasarndt
Jul 21, 20241 min read
16 views
1 comment


Eurordis Meeting in Brussels 12-13 December
DYSNET represented by the Chair Claudio Pirola and the COO Tobias Arndt took part at EURORDIS’ conference in BRUSSELS last December 12...
tobiasarndt
Dec 15, 20231 min read
31 views
8 comments


Franck Brouillard, #HANDISPORT
#PARIS, October 7, 2023 – Many thanks to ’S Seine et Marne (including Paris Ile-de-France) Chairman and Board Member of #ASSEDEA who...
tobiasarndt
Oct 10, 20231 min read
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1 comment


Interview
#PARIS, October 7, 2023 – Many thanks to Franck Brouillard, #HANDISPORT’S Seine et Marne (including Paris Ile-de-France) Chairman and...
tobiasarndt
Oct 10, 20231 min read
6 views
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ERN presentation
IT WAS A HONOUR for DysNet’s Board to meet in a video conference Mr. Luca Sangiorgi, Director Rare Bone Disorders Dept. and Coordinator...
tobiasarndt
Oct 10, 20231 min read
3 views
1 comment
ARTIFICIAL INTELLIGENCE AND DISABILITY
ARTIFICIAL INTELLIGENCE AND DISABILITY – DysNet took part in the specific video conference organized by #EDF-European Disability Forum...
tobiasarndt
Oct 10, 20231 min read
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0 comments


Follow-Up Eurordis membership meeting
FOLLOW-UP – DysNet’s participation to the #EURORDIS Membership Meeting last May 25-27, 2023 in #Stockholm gave us he possibility, among...
tobiasarndt
Sep 20, 20231 min read
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0 comments
Rare Barometer Survey - get involed
DysNet supports Eurordis Rare Barometer Survey. This time screening for rare diseases at birth is highlighted in the survey. Make your...
tobiasarndt
Jul 14, 20231 min read
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Presentation bionic hand - Thank you Prensilia!
Many thanks to Francesco Clemente, Engineer, Managing Director of #Prensilia www.prensilia.com who accepted our invitation to share his...
tobiasarndt
Jun 28, 20231 min read
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EURORDIS - European Rare Diseases Organisation
Time to get to grips with the topic of the new #RareBarometer survey: newborn screening! Simply put, newborn screening is the process of...
tobiasarndt
Jun 22, 20231 min read
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Stockholm - EURORDIS Membership Meeting 2023
(May 25-27) in Stockholm was a great opportunity for me as a Representative of DysNet to meet friends and new people, learn a lot about...
tobiasarndt
May 31, 20231 min read
14 views
1 comment


#Thalidomide @60 We're still here!
On May 14th, 2022 #WSH On Saturday, May 14th, 2022, the #ThalidomideSociety celebrated a big, eventful event at the Heathrow Marriott...
tobiasarndt
May 18, 20232 min read
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CHEZ ASSEDEA IN PARIS
CHEZ ASSEDEA IN PARIS – DysNet’s Chairman Claudio Pirola was invited to participate last May 7 to the meeting “La journée des familles...
tobiasarndt
May 13, 20221 min read
23 views
1 comment

EDRIC is DysNet now
Hi everybody - EDRIC decided to get renamed into DysNet Here are the reasons - EDRIC as for European Dysmelia Reference Infromation...
tobiasarndt
Oct 28, 20201 min read
56 views
0 comments

Covid measures: 83% of rare disease patients’ care was disrupted
"The first weeks of COVID I had fears. Suddenly there was no longer much help or contact. Some operations that should have been done have...
tobiasarndt
Oct 28, 20201 min read
33 views
3 comments
Good read: Josie George story about chronic disease and Covid
In a moving account chronic disease patient Josie George tells hers story: "My personal lockdown has been much longer". Read here.
tobiasarndt
Oct 28, 20201 min read
20 views
1 comment
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