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...
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tobiasarndt
- Jul 14
- 1 min
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...
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tobiasarndt
- Jun 28
- 1 min
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...
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tobiasarndt
- Jun 22
- 1 min
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...
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tobiasarndt
- May 31
- 1 min
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...
13 views1 comment
tobiasarndt
- May 18
- 2 min
#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...
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tobiasarndt
- May 13, 2022
- 1 min
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...
23 views1 comment
tobiasarndt
- Oct 28, 2020
- 1 min
EDRIC is DysNet now
Hi everybody - EDRIC decided to get renamed into DysNet Here are the reasons - EDRIC as for European Dysmelia Reference Infromation...
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tobiasarndt
- Oct 28, 2020
- 1 min
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...
29 views2 comments
tobiasarndt
- Oct 28, 2020
- 1 min
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.
14 views1 comment
tobiasarndt
- 2 days ago
- 1 min
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...
1 view0 comments
tobiasarndt
- Jul 14
- 1 min
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...
1 view0 comments
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