The situation in and around Ukraine continues to evolve at a fast pace, and the needs of people with a rare disease affected by the war are changing.  Even so, …

by Francesco Condello

The ECRD is recognised globally as the largest, patient-led rare disease policy event in which collaborative dialogue, learning and conversation takes place, forming the groundwork to shape goal-driven rare disease …

by Francesco Condello

This topic aims at supporting activities that are enabling or contributing to one or several expected impacts of destination 3 “Tackling diseases and reducing disease burden”. To that end, proposals …

by Francesco Condello

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 …

by Francesco Condello

Seinäjoki University of Applied Science project named TATTI – Using Technology to Make Work Productive and Safe aims to prevent musculoskeletal disorders. The primary goal of the TATTI-project is to …

by Francesco Condello

This is the fifth article of the Dutch, global and non-profit patient organisation for patients with CMTC and other vascular (bloodvessel) malformations, families and healthcare providers. In this edition, we …

by Francesco Condello

As a second emerging crisis of the pandemic comes to light, 10% of all ‘mildly’ affected patients with COVID-19 have not recovered within 14 months of the initial infection (referred …

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 …

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 …

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 …

by Francesco Condello
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