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        • Exciting Interim Results from Phase III Trial VASE: Sirolimus Shows Promise in Managing Vascular Malformations
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      • One swallow doesn’t make spring (summer) yet
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Menu
  • Home
  • Pedia
    • Vascular malformations
      • AV malformation
        • Surgical Resection of an Arteriovenous Malformation
      • Capillary malformation
      • CLOVES
      • CMTC
        • Description
        • Photo gallery
        • Possible complications
        • Possible complications by location
        • Isolated and Classic CMTC
        • Laser treatment
        • Our long journey to the diagnosis CMTC
        • Abbreviations & definitions
        • Dr. van Lohuizen
        • CMTC articles
      • Complex mixed malformation
      • Congenital hemangioma (NICH/RICH)
      • Diffuse Capillary Malformation with Overgrowth (DCMO)
      • Granuloma telangiectaticum
      • Hemangio-endothelioom
      • Infantile hemangioma
      • Klippel-Trenaunay
      • Lymphatic malformation
      • Stork bite
      • Laser in dermatology: past, present and future
      • Sturge-Weber
        • Young people with port-wine stains in high school
        • The Effects of Sturge Weber on Mouth and Teeth
      • Teleangiectasias
      • Tufted angioma
      • Venous malformation
      • Port-wine stain
        • Young people with port-wine stains in high school
      • Multidisciplinary consultation
      • Clinical features of vascular malformations and associated gene mutations
      • New Device Clears Veins in Cases of Serious Thrombosis
      • Treatment of Vascular Malformations with Interventional Radiology
      • Treatment 10%
      • Laser treatment OVM
    • Medication
      • Sirolimus
        • Exciting Interim Results from Phase III Trial VASE: Sirolimus Shows Promise in Managing Vascular Malformations
        • Research for complications with sirolimus
        • Articles sirolimus
      • Alpelisib
        • Alpelisib approved by FDA for treatment of PROS
        • Alpelisib articles and video material
    • Psychology
      • Dermatology from a broader view: mind-body connection
      • Skin diseases and psychological aspects
      • Living with a birthmark
      • After birth
      • Reactions environment
      • State child
      • School and friends
      • Parents Support Guide
      • After the diagnosis brochure
      • Potential impact of medical intervention on very young children
      • Anxiety and pain management in children
      • On the breach for a child-oriented approach
      • Medical supervision
      • Bullying
      • Learning to cope with your condition/vascular anomaly
      • Possible consequences
      • Acceptance
      • The beginning of the end of the relationship
      • Meet Chloe
      • Brother or sister ill
      • Live like an animal
      • Burden of disease
    • Skin
      • Tattoo complications
      • Skin aging
      • Melanomas & moles
      • Skin therapy
      • UV radiation
    • eHealth
      • eHealth
      • Telehealth and medical diagnosis
      • Digital health
      • Virtual nurse
    • Genetics
      • Current state of targeted treatments for vascular malformations
      • The genetic cause of vascular malformations: an update
      • Genetics and vascular malformations
      • Reverse phenotyping in patients with capillary blood vessel abnormalities
      • One swallow doesn’t make spring (summer) yet
      • Searching for the genetic cause of vascular anomalies (such as CMTC)
      • CMTC and genetic mutations
      • Genetics glossary
    • Pedia other
      • Added value patient organisations for medical professionals
      • Dermatology from a broader view: mind-body connection
      • Role of patient organisations in healthcare
      • European Patient Advocay Groups (ePAG’s)
      • European Reference Networks (ERN’s)
      • ISSVA classification
      • Decide together
      • Patient’s voice
      • Rare diseases barometer
      • New developments laser
      • Patient’s rights
      • Rating healthcare providers
      • Holistic person-centred care
      • State of the art activities rare diseases Europe
      • Foreign health care in Europe
    • Links websites
      • European Reference Networks (ERN’s)
      • Skin diseases organisations
      • Other organisations
      • Patient websites
      • Collaboration
      • Vascular diseases organisations
      • Rare diseases organisations
      • Hospitals
    • FAQ’s
      • FAQ CMTC
      • FAQ DCMO
      • FAQ Psychology
      • FAQ Port Wine Stain
    • Videos
      • Information
      • Promotion
      • Other
    • News
      • Latest news
      • Events
      • External conferences intro
      • Newsletters
  • Members
    • Registration
      • Membership registration
      • Become a donor
      • One time donation
    • Medical advice
      • Personal medical advice
      • Diagnosis and treatment in the Netherlands
      • Medical diagnosis facts
    • Member conferences
      • Members’ conference 2024 Information and Registration
      • Netherlands
      • Canada
      • USA
    • Family weekends
    • Family Days
    • Spring meeting days
    • Personal stories
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      • Blog – Ami Hataya (Japan/Singapore)
      • Blog – Arianna Faro (USA)
      • Blog – Katie Allen (Canada)
    • Be informed
      • Social media
      • Social media channels
      • Social media free?
      • Newsletter
      • Medical alarm
      • Visit Netherlands
    • Unwind and reconnect with your loved ones in Ronald McDonald vacation homes
    • Family messages
  • Activities
    • Genetic research
      • Participation
      • Status
    • Information folders
      • Request brochures/booklets
      • AVM folder
      • CMTC folder
      • DCMO folder
      • KTS folder
      • Siblings folder
      • Psychology folder
      • After the diagnosis brochure
      • Parents Support Guide
      • Teachers brochure
      • VASCA Magazine
      • Conversation health care provider folder
      • General Practitioner brochure
      • Patient journey
      • Patient included
    • Online services
    • Patient advocacy
      • Overview per country
      • Experiences patient advocates
      • Encouragement program
      • Become patient advocate?
      • Agenda October 2023
      • Grandparents
      • Way of working
      • Training patient advocate
      • Report PA training 2023
      • Report PA training 2022
    • External conferences
      • Conference participation
      • CORD
      • EADV
      • Eurordis
      • Genetic Alliance
      • Global Skin Foundation
      • ICORD
      • ISSVA
      • NORD
      • VBF
      • Rare diseases day (Netherlands)
      • Other conferences
    • Community voice
    • Projects
    • Webinars
      • Overview & registration webinars
      • Webinar reports
  • Organisation
    • About our organisation
      • Board
      • contact
      • Advisory council
      • Annual reports
      • Financial committee
      • Anniversary booklet 25 years CMTC-OVM
      • Policy plan
      • Budgets
      • Certifications
      • Code of conduct
      • Influence & participation
      • Impact and range
      • Complaints
      • By-laws
      • Internal regulations
      • Conflict of interests
      • Act on Management and Supervision of Legal Entities (WBTR)
      • Proclaimer
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  • Donate now!
     Please, don’t leave me behind!
     0
    By Lex van der Heijden
    In Latest news
    Posted 23-05-2024

    Please, don’t leave me behind!

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     Blog Katie Allen May 2024
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    By Lex van der Heijden
    In Blog Katie Allen
    Posted 22-05-2024

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     New: VASCA magazine 2024!
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    By Lex van der Heijden
    In Latest news
    Posted 10-05-2024

    New: VASCA magazine 2024!

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    By Lex van der Heijden
    In Latest news
    Posted 01-05-2024

    Family Day 2024 Information and registration

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