Many chronic diseases are present at birth and, as time passes by, children with the chronic disease need medical treatments that could be physically painful. This could cause additional psychological issues on top of other issues. Fear and pain management in children has been high on the agenda at the Amsterdam OLVG for five years …

by Francesco Condello

The global CMTC-OVM organisation has its own online Community. The main reason is the misuse of personal data by eg Facebook and Google. This application is running on a secure and GDPR compliant environment. What does this application offer you? This is the fifth article of the Dutch global non-profit patient organisation for patients with …

by marsa

This magazine was created on the initiative of the European Patient Advocacy Group (ePAG) members of the Vascular Anomalies Working Group(VASCA WG) in VASCERN and was kindly supported financially by VASCERN  through its European Union co-funding. For this we would like to thank the VASCERN coordination team in Paris. Our thanks also go to the …

by Francesco Condello

You finally get the medical diagnosis, but what happens next?This series of articles provides support to those asking questions like ”What does the future look like for our child and us? What can or cannot our child do later? What is the life expectancy of our child? etc.”. You’ll receive practical advice for anyone who …

by Francesco Condello

This is the third article of the Dutch global non-profit patient organisation for patients with CMTC and Other Vascular (bloodvessel) Malformations, their families and healthcare providers. As children are born with skin and/or physical problems, such as that at CMTC, we speak of Conspicuous External Features (CEF). Its divisiveness prevents this that there are all …

by Francesco Condello

Photo submissions for the Photo Award 2021 are now open, until 31st January 2021 (see form below). The EURORDIS Photo Award is an opportunity to visually express what it means to live with a rare disease and to share your story with the rare disease community and beyond. The contest is open to all nationalities, …

by Heather Smith
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