• 2 days ago
(Adnkronos) - "Oggi i pazienti con emofilia, grazie alle terapie disponibili, dovrebbero pensare maggiormente non tanto al rischio che proviene dal fare attività fisica ma a quello che corrono se non ne fanno". Questo quanto detto da Jason Donohue, community engagement director haemophilia di Sobi, durante l'incontro "Sobi Let’s Talk. Mont Blanc experience: to the next level" che ha l’obiettivo di approfondire argomenti di attualità e prospettive inesplorate in un contesto, per alcuni aspetti ancora poco conosciuto, come quello delle malattie rare.

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00:00The reason that we engaged in this project around Mont Blanc, we were approached about…
00:10About a year and a half ago we took part in this project about the Mont Blanc Foundation,
00:13which is a global organization that supports patients with hemophilia around the world.
00:16We started working on this project about a year and a half ago,
00:18and they approached us about this project,
00:20which is a global organization that supports patients with hemophilia around the world.
00:25The reason for us to scale Mont Blanc to 8 people with hemophilia,
00:29the reason for which we took part in this project,
00:32which is very important and which we wanted to have an impact,
00:35is that we feel that it would be an opportunity to inspire the community
00:39and to help to produce a change in the thinking
00:42according to which with hemophilia you have to stay at home
00:45where you cannot take risks and you cannot do physical activities.
00:49Today, in fact, patients with hemophilia,
00:52thanks to the available therapies,
00:54should think more about the risk of not engaging in physical activity,
00:57but more about the risk of not engaging in physical activity.
01:01We therefore thought that this project was a perfect way to inspire patients
01:05about the challenges that could be in their lives,
01:09what is their Mont Blanc,
01:11inspiring them to make, even in small steps,
01:13a change in their lives,
01:15seeing what is possible to do for patients with hemophilia.
01:20In this project we have 8 patients with hemophilia
01:22who face an incredible challenge,
01:24but the inspiration that comes from this
01:26can push other patients to take smaller steps,
01:29such as getting up from the couch and going to a concert,
01:32or getting out of their comfort zone,
01:34because today many things are possible thanks to the evolution of therapies.

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