Vlaamse(Flemish) Patienten Vereniging/Foundation: Ehlers-Danlos, Marfan, Loeys-Dietz, Stickler Aorta Aneurysma http://t.co/0ZQav827xm
Belgium
Joined February 2013
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📉 Just 5% of people living with a rare disease have received a transformative treatment approved for the entire EU
✍️ @Frederiqueries writes #RareDiseaseDay
#PartnerContent | @TakedaPharma | @EFPIA | @EUCOPE | @eurordis
theparliamentmagazine.eu/new…
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#ERNReCONNET Strategic #Meeting: ready for #RareDiseaseDay 2023
#rarediseases #awareness #PatientsInvolvement #RareIsMany
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#ERNReCONNET Strategic #Meeting in Rome (2-3 February 2023).
More than a strategic Network. 😉
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Day 2 #VASCERNDays2022 has started!
It is so wonderful to hear all about the upcoming #projects from our ePAG #advocates. Thank you for your active #representation of the #patient community.
It's also great to have representatives from #EURORDIS with us.
#rarediseases #ERNeu
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Elena de Moya HTAD, Charissa Frank MSA, Caroline van den Bosch VASCA, Pernille Henriksen PPL: all co chairs (E-pags) of Vascern. Online: Claudia Croccione Co chair HHT and chair of the group #Vascerndays2022 @deMoya_Elena @CharissaFrank @LymphaThe @CopiadiCla @CarolineCabo
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❗ TWO DAYS LEFT ❗
If you have not registered for our #webinar this Wednesday on #Pregnancy & Preimplantation genetic diagnosis in vEDS, there is still time.
Participation is free but registration is required to receive the webinar link.
Register here👉bit.ly/3Dlbs3H
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🆕 article published in @FrontiersIn Medicine
"An overlook on the current #registries for rare and complex connective tissue diseases and the future scenario of #TogethERN ReCONNET"
frontiersin.org/articles/10.…
#EuropeanReferenceNetworks
ERN ReCONNET. More than a Network.
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ERN ReCONNET Ehlers-Danlos Syndromes Group Kick-off meeting with the Disease Coordinators (@malfaitcmgg and Alberto Sulli) and the ePAGs
Eva Collado and @CharissaFrank
Fourth of ten #KoM, addressing challenges.
reconnet.ern-net.eu/disease-… #EDS
#ERNReCONNET. More than a Network.
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📢Register for our upcoming online webinar!
📚Title: “Pregnancy and PGD in Vascular Ehlers-Danlos Syndrome”
📆28 September
🕑5PM CEST
Registration is free but required. Don't miss it!
bit.ly/3Dlbs3H
#ehlerdanlossyndrome #vascular #RareDisease #webinar #pregnancy #PGD
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Do you want to know more about arterial complications in #vEDS patients?
Here is a short clip on the types of arterial complications in Vascular #EhlersDanlosSyndrome. Find out what treatment options are available.
Watch the full video➡️ youtube.com/watch?v=i-VfQfyx…
#raredisease
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The #MSA WG held an excellent Spring meeting today. Lots of great ideas for patient-centered #webinars on #vascular #EhlersDanlosSyndrome and #pregnancy. There were also discussions about #CPMS #registries #moodle e-learning and more! #ERNeu #MSA @IngridvdLaar @CharissaFrank
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Check out the🆓review 📑
"The added value of a #EuropeanReferenceNetwork on rare and complex connective tissue and musculoskeletal #diseases: insights after the first 5 years of the #ERNReCONNET" on @clinexprheum
➡️clinexprheumatol.org/abstrac…🔗
ERN ReCONNET. More than a network.
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New edition of the VASCERN #newsletter out now! 🗞️
Don't miss all the upcoming #events + latest news, including new #PPL #lymphedema resources, #capillary malformations pathway #webinar recording, #rarediseaseday2022 + more!
▶️vascern.eu/?na=archive&email… @EJPRareDiseases @EU_Health
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#ERNReCONNET Plenary Meeting: Day 1 is finished
In 2017 we chose to be one in many things.
I̸n̸ ̸2̸0̸2̸2̸ ̸ ̸̷̸w̸̷̸e̸̷̸ ̸̷̸w̸̷̸i̸̷̸l̸̷̸l̸̷̸ ̸̷̸b̸̷̸e̸̷̸ ̸̷̸e̸̷̸v̸̷̸e̸̷̸n̸̷̸ ̸̷̸s̸̷̸t̸̷̸r̸̷̸o̸̷̸n̸̷̸g̸̷̸e̸̷̸r̸̷̸.
In 2022 we are stronger.
And the journey is still at the beginning.
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A key meeting to improve organisation in #EhlersDanlosSyndromes #patients' pathways:
the ERN ReCONNET #EDS Expert Panel Consensus Meeting on #Patient's #Pathways has started.
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2/2
🇫🇷bit.ly/Edu_fr
🇩🇪bit.ly/Edu_de
🇬🇷bit.ly/Edu_el
🇭🇺bit.ly/Edu_hu
🇮🇹bit.ly/Edu_it
🇵🇱bit.ly/Edu_pl
🇵🇹bit.ly/Edu_pt
🇷🇴bit.ly/Edu_ro
🇪🇸bit.ly/Edu_es
🇸🇪bit.ly/Edu_sv
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1/2
Participate in #ERNReCONNET #Surveys on #Training and educational needs for #clinicians
bit.ly/ReCONNET_HCPs
and for #patients & #caregivers
🇬🇧bit.ly/Edu_en
🇧🇬bit.ly/Edu_bg
🇭🇷bit.ly/Edu_hr
🇨🇿bit.ly/Edu_cs
🇳🇱bit.ly/Edu_nl
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2. The survey is available in these languages:
🇬🇧bit.ly/EDS_en
🇳🇱bit.ly/EDS_nl
🇫🇷bit.ly/EDS_fr
🇩🇪bit.ly/EDS_de
🇮🇹bit.ly/EDS_it
🇸🇪bit.ly/EDS_sv
#EhlersDanlosSyndrome
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New series of Do’s and Don’ts #factsheets on #LoeysDietz syndrome by the #HTAD WG just released! Download, read and share them now ➡️: vascern.eu/new-dos-and-donts…
#ERNeu @judbacke #recommendations #LoeysDietzsyndrome #LDSAwareness @JondeauG @LDSFoundation
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New #review paper on #MarfanSyndrome has just been published in @DiseasePrimers: co-authored by our very own Professors @judbacke, @JondeauG, Catherine Boileau, @masipartur #HTAD WG! Access it here: vascern.eu/new-nature-review… @assomarfans @marfanbe @SIMA_Asociacion @marfan_den_i
