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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bindweefsel.be retweeted
📉 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…
bindweefsel.be retweeted
#ERNReCONNET Strategic #Meeting: ready for #RareDiseaseDay 2023
#rarediseases #awareness #PatientsInvolvement #RareIsMany
bindweefsel.be retweeted
#ERNReCONNET Strategic #Meeting in Rome (2-3 February 2023).
More than a strategic Network. 😉
Het bestuur van bindweefsel.be hoopt dat 2023 een sparkelend en mooi jaar zal worden voor jou en geliefden!
The bindweefsel.be board members wish you and your loved ones, a sparkling and beautiful 2023!
(foto dank aan pixabay)
Het is een spijtige zaak @jan_bertels dat de Minister niet geluisterd heeft naar de noden van de patienten verenigingen! Wat zijn wij met een andere ZOPP, we zijn geen kleuters, we hebben financiële middelen nodig geen oppassers. Zeldzame ziekte vallen dubbel uit de boot!
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bindweefsel.be retweeted
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
bindweefsel.be retweeted
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
Als u zich nog niet heeft ingeschreven voor ons webinar aanstaande woensdag over zwangerschap & preimplantatie genetische diagnose bij vEDS, is er nog tijd.
Deelname is gratis, maar registratie is vereist om de webinarlink te ontvangen.
Schrijf u hier in👉bit.ly/3Dlbs3H
❗ 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
bindweefsel.be retweeted
❗ 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
bindweefsel.be retweeted
🆕 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.
bindweefsel.be retweeted
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.
bindweefsel.be retweeted
📢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
bindweefsel.be retweeted
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
Heb jij nog vragen over vEDS, grijp nu jouw kans om deze te mogen stellen aan experts in een interactieve webinar. Info op onze FB pagina facebook.com/Bindweefsel.be
#vEDS @vascern #patient
bindweefsel.be vraagt de overheden voor meer middelen vrij te maken 4 Integratie ZZ. Dankbaar VNZZ maar zonder financiële budgetten kan men niet veel doen voor de patiënten. #zeldzameziekteplan #ERN #EDS #Marfan #loeysdietz tvoost.be/nieuws/vlaamse-ver…
EDS onder de aandacht en vraag voor bijkomende middelen EDS onder de aandacht !
tvoost.be/nieuws/vrouw-die-l…
tvoost.be/nieuws/vlaamse-ver…
#EDS #zeldzameziekteplan #VNZZ #belgie #vlaanderen #integratie
Beweging en sport is the beste manier om fit & gezond te blijven.
Exercising is one of the best ways to keep fit & healthy. Patients with vEDS are not excluded from exercising, but your safety comes first.
Here is a list of Dos and Don'ts for engaging in sport activity and exercising as a #vEDS patient.
▶️Download it: vascern.eu/wp-content/upload…
bindweefsel.be retweeted
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
