De ESPKU benchmarkstudie die vandaag gelanceerd wordt in het Europees Parlement laat dezegrote verschillen in Europa zien. Daarnaast verschillen de rol van de dietisten en heeft die verschillende verantwoordelijkheden. Ook de vergoeding van dieetadvies en behandeling met geneesmiddelen varieert sterk. Dit is het gevolg van,onder andere, een gebrek aan richtlijnen in de meerderheid van de lidstaten. In heel Europa loopt de wijze van diagnose en behandeling van PKU sterk uiteen. PKU patienten moeten een streng dieet dat vaak grote invloed op de patient, maar ook van de verzorger van de kwaliteit van het leven te volgen. Met behandeling kan mentale retardatie worden teruggedraaid. Veroorzaakt door een genetische stoornis, een ernstige onbehandelde geval van PKU leidt tot diepgaande en onomkeerbare mentale handicap. PKU is een van de meest voorkomende “zeldzame” ziekte in Europa, die 1 op de 10.000 mensen in Europa. Nederlandse PKU deskundige en kinderarts Francjan van Spronsen speelt een leidende rol in Europa in de ontwikkeling van monitoring oplossingen, hij heeft een pilot-online monitoring programma voor PKU patienten. In Nederland is er een vrij goede behandeling en de opties zijn, in vergelijking met andere Europese landen, prima. Maar er moet een betere controle van volwassen patienten om ervoor te zorgen dat ze hun volledige potentieel te bereiken zijn. More reports are out there for instance, this one and that one.Vandaag is het Wereld Zeldzame Ziekte Dag en de Europese Vereniging voor fenylketonurie (ESPKU) roept beleidsmakers om actie te ondernemen om de zorg voor PKU patienten in heel Europa te verbeteren. Definitely not just me.Įdit 3: While trying to reply to someone on Facebook, that was trying to defend Facebook, I mentioned and got this:Įdit 4: It is far more than just me, clearly. It sounds like it may be happening on Twitter as well.Įdit 2: And here are some other reports from both Facebook and Twitter. Maybe I’d feel sorry for them if they weren’t acting like a bully.Įdit: There are reports from several others on Mastodon of the same happening this week. So what would cause a non-controversial post from a long-time Facebook member that has never had anything like this happen, to disappear? Indeed I did tick a box that said I disagreed, but there was no place to ask why or to question their action. “Well,” you might be wondering, “Why not appeal, since they obviously made a mistake?” Because, of course, you can’t: Or, are they sincere about thinking they’re such a force for good by “connecting the world’s people?” Well, only so long as the world’s people don’t say nice things about alternatives to Facebook, I guess. In case you wondered about their sincerity towards stamping out misinformation - which, on the rare occasions they do something about, they “deprioritize” rather than remove as they did here - this probably answers your question. Why they decided today to take down that post – I have no idea. I have been a member of Facebook for many years, and this is the one and only time anything like that has happened. and it is probably obvious that what tripped the filter was the mention of an open source competitor, even though Facebook is much more enormous than Mastodon. Wonder with me for a second what this one-off post I composed myself might have done to trip Facebook’s filter…. Today, I received this notice that Facebook had censored my post about Mastodon: I’ve blogged about Mastodon and the dangers of Facebook before, but rarely mentioned Mastodon on Facebook itself. Mastodon is an open-source and open social network, which is decentralized and all about user control instead of corporate control. Last November, I made a brief post to Facebook about Mastodon. Update: Facebook has reversed itself over this censorship, but I maintain that whether the censorship was algorithmic or human, it was intentional either way.
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