AssoMarfans

Merci à vous ! Nous avons atteint notre objectif initial pour réaliser nos premières vidéos à destination des enfants Marfan et apparentés. Et si nous tentions d'atteindre les 150% de l'objectif pour produire encore plus de vidéos ? Nous avons besoin vous, n’hésitez pas à participer à notre cagnotte collaborative sur https://lnkd.in/enj_uhPE Thank you ! we have reached 102 % of our initial objective ! What if we tried to reach 150% of the objective to produce even more videos? Support the creation of our videos to encourage physical activity in children with Marfan syndrome and related disorders! https://lnkd.in/enj_uhPE

⏰ 22 days left ! And we have reached 87% of our objective! 🙏 A warm thank you to all our donors ! It is still time to support the creation of AssoMarfans videos to encourage physical activity in children with Marfan syndrome and related disorders! https://lnkd.in/enj_uhPE 🎯 Exercise and a personalized training program in children and young adults significantly enhances Quality Of Life and cardiovascular/muscular metrics in patients with Marfan syndrome and related disorders, without affecting aortic root diameter. https://lnkd.in/epQvpEz9 @Steve Jouini Olivier Milleron Guillaume Jondeau #GreaterParisUniversityHospitals - #APHP 🎯 There is a significant positive association of physical health score with cardiopulmonary fitness. Physical activity and specific rehabilitation programs should be a major educational objective for in children with congenital heart disease. Greater awareness among all professionals involved in the care of children with Marfan syndrome, Loeys-Dietz syndrome and related disorders and their families must be developed. https://lnkd.in/dGy6PXut Yves Dulac, @Thomas Edouard, Fernanda Bajanca, #CHUToulouse 🎯 Recommendations on exercise, recreational, and competitive sports participation https://lnkd.in/dvEBSfYi VASCERN, European Reference Network on Rare Multisystemic Vascular Diseases ❤️ Patients with Marfan, Loeys-Dietz and related syndromes continue to face many morbidities, including the sequelae of multiple surgeries as well as musculoskeletal impairments that clearly have an impact on daily activities and their overall Quality of Life. Children and adults with Marfan syndrome and related syndromes very frequently complain of chronic fatigue and a lack of physical endurance. Excessive flexibility of the body's supporting tissues (connective tissues) and a muscle deficit could be at the origin of these symptoms due to increased stress on the skeleton. The muscle mass deficit, already present in young children and adolescents, worsens in adulthood. This muscle deficit could also explain, at least in part, a bone mass deficit observed in child and adult patients.

⏰ 22 days left ! And we have reached 87% of our objective! 🙏 A warm thank you to all our donors ! It is still time to support the creation of AssoMarfans videos to encourage physical activity in children with Marfan syndrome and related disorders! https://lnkd.in/enj_uhPE 🎯 Exercise and a personalized training program in children and young adults significantly enhances Quality Of Life and cardiovascular/muscular metrics in patients with Marfan syndrome and related disorders, without affecting aortic root diameter. https://lnkd.in/epQvpEz9 @Steve Jouini Olivier Milleron Guillaume Jondeau #GreaterParisUniversityHospitals - #APHP 🎯 There is a significant positive association of physical health score with cardiopulmonary fitness. Physical activity and specific rehabilitation programs should be a major educational objective for in children with congenital heart disease. Greater awareness among all professionals involved in the care of children with Marfan syndrome, Loeys-Dietz syndrome and related disorders and their families must be developed. https://lnkd.in/dGy6PXut Yves Dulac, @Thomas Edouard, Fernanda Bajanca, #CHUToulouse 🎯 Recommendations on exercise, recreational, and competitive sports participation https://lnkd.in/dvEBSfYi VASCERN, European Reference Network on Rare Multisystemic Vascular Diseases ❤️ Patients with Marfan, Loeys-Dietz and related syndromes continue to face many morbidities, including the sequelae of multiple surgeries as well as musculoskeletal impairments that clearly have an impact on daily activities and their overall Quality of Life. Children and adults with Marfan syndrome and related syndromes very frequently complain of chronic fatigue and a lack of physical endurance. Excessive flexibility of the body's supporting tissues (connective tissues) and a muscle deficit could be at the origin of these symptoms due to increased stress on the skeleton. The muscle mass deficit, already present in young children and adolescents, worsens in adulthood. This muscle deficit could also explain, at least in part, a bone mass deficit observed in child and adult patients.

Support the creation of our videos to encourage physical activity in children with Marfan syndrome and related disorders! https://lnkd.in/enj_uhPE

Merci à la Fondation 101 Génomes de nous avoir invités à son dernier comité scientifique. Les avancées réalisées sont tout simplement impressionnantes et les perspectives à venir très intéressantes.

People living with Loeys-Dietz syndrome (LDS) and related genetic aortic and vascular conditions have a roughly 250x greater chance of aortic dissection than the general public. People like Paige's late husband, Derrick. CT scans save lives. Genetic testing saves lives. Derrick's surviving family members are living proof. #AorticAwareness #ThinkAortaThinkFamily #LoeysDietzSyndrome #EmergencyMedicine #FirstRepsonders #AortaEd

Very important publication from our team on exercise benefits in patients with Marfan syndrome: online training program significantly enhanced Quality Of Life and cardiovascular/muscular metrics in patients with MFS without affecting aortic root diameter. AP-HP, Assistance Publique - Hôpitaux de Paris VASCERN, European Reference Network on Rare Multisystemic Vascular Diseases Marfans France https://lnkd.in/e75eysY7

Reste à charge & #ALD | La sortie de deux rapports en vue de recherche d'économies publiques confirme nos inquiétudes quant à l'accès aux soins des personnes malades ou en situation de handicap ! 👉 Le premier rapport propose notamment la création d'une franchise de 1€ sur les dispositifs médicaux et de diminuer leur taux de remboursement, l'autre remet en cause la prise en charge à 100% des ALD. Les personnes en ALD sont celles qui accusent déjà le plus de reste à charge. Ce sont aussi les premières confrontées aux dépassements d’honoraires qui explosent et aux frais non remboursés. ⚠ France Assos Santé appelle à en finir avec les solutions de facilité, source de renoncement aux soins entrainant au final un surcout pour la collectivité. Les usagers ne sont pas responsables des pratiques professionnelles contraire aux recommandations. Assurance Maladie Ministère de la Santé https://lnkd.in/eUjxQUzk

https://lnkd.in/ekdf8CiA

Aujourd'hui se tient le colloque scientifique de la Fondation Maladies Rares, nous y participons en spectateur. Beaucoup d'informations sont partagées avec une table ronde intéressante intitulée "Les associations de patients et leur implication cruciale dans la recherche".