VASCAPA_asbl @VASCAPA
La Vascular Anomaly Patient Association (VASCAPA) est une a.s.b.l qui a pour objet d’aider les personnes souffrant d’anomalies vasculaires . vascapa.org Brussels, Belgium Joined January 2013-
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Retour sur le #vascapaday. Voici un petit récapitulatif.
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📣 Journée VASCAPA 2024 Cette fois, les présentations seront construites autour des questions que VOUS vous posez! Nous allons explorer l'hérédité, les traitements, la grossesse, la gestion de la douleur, et bien d'autres défis quotidiens directement basés sur VOS préoccupation
📣 Journée VASCAPA 2024 🎥 Regardez notre teaser vidéo avec les intervenants de 2023! 📅 Date: Samedi 9 mars 2024, de 9h00 à 13h00 à l'Institut de Duve. 🔍 Dernières places disponibles! Réservez la vôtre dès maintenant! forms.gle/6FgB3FZjrZr73H…
Plus de détails à venir prochainement. Ne manquez pas notre prochaine Newsletter. Meer details volgen binnenkort. Houd onze nieuwsbrief in de gaten. #vascapaday #maladiesrares #vascapa #maladiesraresbelgique #zeldzameziekte #zeldzameziekte #association #patients
Rendez-vous le 21 mai 2022 pour notre " Vascapa Day "de 9h à 13h à l'Institut de Duve, Bruxelles. Inscrivez-vous à l'aide du formulaire ci-dessous. Op 21 mei 2022 onze "Vascapa Dag" van 9 tot 13 uur in het Institut de Duve, Brussel. Schrijf u in via onderstaand formulier.
Bewaar de datum de #VascapaDay zal plaatsvinden op 5 maart 2022!!!🎉👀 Meer informatie volgt
🎉Réservez la date le #VascapaDay aura lieu le 5 mars 2022!!🎉👀 Plus d'informations suivront.
VASCA Magazine: full of information on diagnosis, treatment and research on #vascularanomalies. Edited by #ePAGs #VASCA. Download at: vascapa.org
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The #VascularAnomalies #VASCA WG finish their first session @ #VASCERNDays2020! 😊 New #publications, PoK #videos for #patientpathways, #registry, #online #seminars + more! #ERNeu @MiikkaVikkula @leoschultzekool @HevasNederland @LGDA_EU @CMTCOVM @HecovanNijmegen @pupistuff
#VASCERNDays2020. 3 days of online meetings and networking! With representatives from Expert Healthcare Centers on vascular diseases and European Patient Advocacy Group patient advocates. And VASCAPA will be there!!! check the program at: vascern.eu/news/events/?e…
VASCAPA attending the International Conference on Vascular Anomalies #ISSVA2020 @ISSVA1992
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VASCAPA_asbl retweeted
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This #RareDiseaseDay, we want to draw attention to #rarediseases while celebrating communities coming together to support each other through tough times. Find your community on @RareShareOrg: rareshare.org/communities
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Ren Cai(蔡韧) @RichardRenCai1
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Jinia 😷 🇱🇧ج... @el_jinia
193 Followers 411 Following 🎼🌱👩🏼⚕️🐬🤶🏻📽️🎧🦢🌷🍕🏕️♻️🌐💒🏙🧝🏻♀️💜 #PediatricDermatology 🐛🦋🦄
Bas Verhoeven @BasHVerhoeven
176 Followers 231 Following
Sascha Joosten @JoostenSascha
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Julia Udaquiola @julia_udaquiola
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IBSS @DaIlhame
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Maritza S @Maritza90761693
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Filière FAVA-Multi @FAVAMulti
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Taizo Nakano @NucleatedRBC
535 Followers 685 Following Pediatric Hematologist, Vascular Anomalist, advocate for rare diseases, BMF/MDS #FailBetter #FailForward, and pediatric vascular anomalies
ONG Les Femmes Fortes... @FemmesFortesRDC
423 Followers 1K Following Femmes congolaises, levons nous, prenons conscience des défis à relever et contribuons au développement de notre cher et beau pays 🇨🇩 +243 994174042
CavernomaIreland @CavernomaIre
268 Followers 1K Following ☘Cavernoma Ireland is a support group to help people in Ireland who are affected by #cavernoma, including their families, friends and carers. #CCM
ninicoton procureur @ninicoton
485 Followers 785 Following Intolérance à l'injustice pas de messages privés svp merci Je n'utilise pas tweeter à des fins matrimoniaux et en plus je suis fauchée
Laurence Boon @LaurenceBoon2
41 Followers 21 Following
SandraV @sciencetwin1
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The Belgian Kids' Fun... @BelgianKidsFund
87 Followers 298 Following Fonds Scientifique de l'HUDERF Wetenschappelijk Fonds van het UKZKF Scientific Fund of QFUCH Supporting #Paediatric #Research @HUDERF_UKZKF
Syrine.K @SyrineK5
1 Followers 29 Following
Marle Kraft @KraftMarle
84 Followers 167 Following Postdoctoral researcher at @cmn_vib @UAntwerpen Shifting gears from Vascular Biology to Computational Neurobiology I swim, run and bike 🏊♀️🚴♀️🏃♀️
Caroline van den Bosc... @CarolineCabo
21 Followers 23 Following
RARE à l'écoute @EcouteRare
869 Followers 1K Following 🎙️ RARE à l'écoute – Le 1er média 100% dédié aux maladies rares Symptômes, dépistage, errance diagnostique Prix Caducée Parcours patients 🎧 Podcasts & lives⤵
MY WISH @superstar_wish
529 Followers 3K Following “Always remember... Rumors are carried by haters, spread by fools, and accepted by idiots.” Fan of Super Star ⭐ 💫
Kristen P Davis @kristenpdavis
264 Followers 579 Following Advocate for PIK3CA Related Conditions. Founder and Executive Director at CLOVES Syndrome Community (views here are my own) #PIK3CA #RareAsOne
Ana Angulo-Urarte @aangulou
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93 Followers 227 Following Professor of Biochemistry at the Medical School of University of Torino (Italy). Scientific interest; vascular biology
HEVAS @hevas_nl
428 Followers 678 Following Support and advice for patients with hemangiomas, vascular anomalies and over/undergrowth syndromes #ISSVA #Vascern #Hecovan
Marco Coppola @coppoma
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LGD Alliance Europe @LGDA_EU
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European Cavernoma Al... @EuropeCavernoma
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101 Genomes Foundatio... @F101Genomes
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ERN EuroBloodNet @ERNEuroBloodNet
2K Followers 405 Following ERN-EuroBloodNet aims to improve healthcare and quality of life of patients with Rare Hematological Diseases. Funded by the European Union.
VASCERN @vascern
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RareX @RareX_2018
798 Followers 2K Following The second biennial Rare Diseases Conference (RareX 2018) will take place from 13 to 16 September 2018 at The Canvas Riversands in Fourways, Gauteng.
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Emilie @_eilime_
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Lymphangioma Blog @LymphangiomaB
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Jon Sneyers 🟣 @jonsneyers
3K Followers 3K Following 🗜️🖼️ JPEG XL dev (ISO/IEC 18181 editor). Leftist nerd 🔻🤓. Peace 🇵🇸☮️🇮🇱. Member of ISO (@isostandards) and ISA (@isa_socialists) ✊🏿. He/him.
maggie de block @maggiedeblock
882 Followers 1 Following We verwijzen u graag naar de enige echte officiële twitter-account : @Maggie_DeBlock
Maggie De Block @Maggie_DeBlock
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La Chaîne de l'Espoi... @chainedelespoir
7K Followers 2K Following Depuis 1994, nous agissons pour permettre aux #enfants démunis d'accéder aux #soins. 🎯 #StopAttente : Plus vous donnez, moins ils attendent !
Fondation Maladies Ra... @fdmaladiesrares
3K Followers 342 Following Fondation de coopération scientifique | Foundation For Rare Diseases - Foundation for scientific cooperation
Maladies Rares Info S... @maladierareinfo
3K Followers 1K Following Service d'information, d'orientation et de soutien spécialisé dans les maladies rares et l'errance diagnostique associée - n° vert 0800 40 40 43
Alliance maladies rar... @AllianceMR
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CanMPSSociety @CanMPSSociety
692 Followers 365 Following Support for families. Research for a cure. Donate today #givethegiftofhope
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696 Followers 153 Following Supporting those affected by Neurodegeneration w/ Brain Iron Accumulation #PKAN #BPAN #MePAN #PLAN #MPAN #FAHN #IdiopathicNBIA #TeamNBIA #findcures
Unique @Unique_charity
8K Followers 2K Following Unique supports and informs anyone born w/a rare chromosome or gene disorder, their families and carers. Eurordis Patient Organisation Award winner.
Project Alive @Projectalive
1K Followers 361 Following 501c3 funding first gene therapy clinical trial for Hunter Syndrome with your help. Save kids from a rare, terminal disease that steals them by their teens.
RDLA @RareAdvocates
6K Followers 2K Following A program of the EveryLife Foundation committed to growing the patient advocacy community and working collaboratively, thereby amplifying the patient voice!
RD-Connect @ConnectRD
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1K Followers 288 Following Rare Disease Day seeks to raise awareness in the community and their impact. Rare Disease Day is on the 28th of Feb. http://t.co/oZiOIn3T
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497 Followers 247 Following A platform for sharing best practices for the management of #RareDisease @cnmr_ISS (Istituto Superiore Sanità) @DTaruscio @EUROPLANproject @Rare_Journal
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Rare Genomics @RareGenomics
9K Followers 3K Following RGI is a non-profit organization that provides research to families in need of diagnosis & treatment for rare genetic diseases.
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2K Followers 5K Following 'Alström Syndrome is a rare genetic condition affecting every organ in the body. ASUK provides support & guidance for those affected.' Tweets by Catherine Lewis
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8K Followers 495 Following Changing the lives of patients affected by rare & undiagnosed diseases through social support, advocacy & treatment-focused research. https://t.co/qWTTVoKeyL
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PatientsLikeMe @patientslikeme
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Rare Disease Day US @RareDayUS
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