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    • Home
    • Pedia
      • 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
      • OVM
        • AV malformation
          • Surgical Resection of an Arteriovenous Malformation
        • Capillary malformation
        • CMTC (OVM)
        • CLOVES
        • Complex mixed malformation
        • Congenital hemangioma (NICH/RICH)
        • Diffuse Capillary Malformation with Overgrowth (DCMO)
        • Granuloma telangiectaticum
        • Hemangio-endothelioom
        • Infantile hemangioma
        • Klippel-Trenaunay
        • Lymphatic malformation
        • Port-wine stain
          • Young people with port-wine stains in high school
        • Stork bite
        • Sturge-Weber
          • The Effects of Surge Weber on Mouth and Teeth
        • Teleangiectasias
        • Tufted angioma
        • Venous malformation
        • Clinical features of vascular malformations and associated gene mutations
        • New Device Clears Veins in Cases of Serious Thrombosis
        • Multidisciplinary consultation
        • Treatment of Vascular Malformations with Interventional Radiology
        • Treatment 10%
        • Laser treatment OVM
      • Skin
        • Skin aging
        • Melanomas & moles
        • Skin therapy
        • UV radiation
      • Psychology
        • After birth
        • Reactions environment
        • State child
        • School and friends
        • After diagnosis
        • 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
      • eHealth
        • Telehealth and medical diagnosis
        • Digital health
        • Virtual nurse
      • Genetics
        • 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
        • 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 NL
        • Rating healthcare providers
        • Holistic person-centred care
        • State of the art activities rare diseases Europe
        • Sirolimus
          • Research for complications with sirolimus
          • Articles sirolimus
        • Alpelisib
          • Alpelisib approved by FDA for treatment of PROS
          • Alpelisib articles and video material
        • Foreign health care in Europe
    • Knowledge base
      • Links websites
        • European Reference Networks (ERN’s)
        • Skin diseases organisations
        • Other organisations
        • Patient websites
        • Collaboration
        • Vascular diseases organisations
        • Rare diseases organisations
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        • FAQ Psychology
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        • Parents Support Guide
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        • Overview per country
        • Experiences patient advocates
        • Encouragement program
        • Become patient advocate?
        • Agenda October 2023
        • Grandparents
        • Way of working
        • Training patient advocate
        • Report PA training 2022
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          • Budget 2019
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    Archives

    Monthly Archive for: "May, 2023"
    Home » Archives for May 2023
     Blog Katie Allen May 2023
     0
    By Lex van der Heijden
    In Blog Katie Allen
    Posted 23-05-2023

    Blog Katie Allen May 2023

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     Use patients’ experience!
     0
    By Lex van der Heijden
    In Latest news
    Posted 11-05-2023

    Use patients’ experience!

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     CORD 2023 – rare disease day 2023
     0
    By Lex van der Heijden
    In External conferences CORD
    Posted 02-05-2023

    CORD 2023 – rare disease day 2023

    READ MORE

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