{"id":7711,"date":"2023-10-19T01:09:02","date_gmt":"2023-10-19T01:09:02","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?post_type=tribe_events&p=7711"},"modified":"2024-01-30T20:13:23","modified_gmt":"2024-01-30T20:13:23","slug":"lgmdr9-lgmd2i-european-patient-day","status":"publish","type":"tribe_events","link":"https:\/\/www.lgmd-info.org\/es\/event\/lgmdr9-lgmd2i-european-patient-day\/","title":{"rendered":"LGMDR9 (LGMD2i) European Patient Day"},"content":{"rendered":"

\"\"\"<\/p>\n

Excited to share about the first LGMDR9 (LGMD2I) European Patient Day on Saturday May 25th 2024 at Double Tree by Hilton, Amsterdam, The Netherlands.<\/span><\/p>\n

The conference will provide an opportunity to listen and speak to experts in the field, discuss your shared experiences of LGMDR9 and make new acquaintances.<\/p>\n

The conference will be held on Saturday 25th May 2024<\/b> at Double Tree by Hilton, Amsterdam<\/b> Centraal Station, The Netherlands<\/b>.<\/span><\/div>\n
<\/div>\n
This event is a gathering of individuals affected by limb girdle muscular dystrophy type R9\/2I (LGMDR9\/LGMD2I), including patients, their families and clinical experts, to meet, share experiences and learn about progress in research and clinical trials.<\/span><\/div>\n
<\/div>\n
This in-person event is open to individuals in the LGMDR9 community living in Europe and the United Kingdom. Recordings will be available after the event to share with the wider global community.<\/span><\/div>\n
The LGMDR9 Community Day is free to attend and will include refreshments and dinner. The cost of hotel accommodation is not included. DoubleTree has reserved rooms for this event at a reduced rate. Booking details will be shared after completion of the Expression of Interest form.<\/span><\/div>\n
<\/div>\n
Expression of Interest form: https:\/\/forms.office.com\/e\/FbBhEfuE6m<\/a><\/b><\/span><\/div>\n
If you would like to attend the Community Day in person, please complete this form to express your interest. The organizing team will review requests and confirm registration as soon as possible. Please wait for confirmation before making travel arrangements.<\/b><\/span><\/div>\n
<\/div>\n
Please see a summary of the draft conference agenda below.<\/span><\/div>\n
<\/div>\n
European LGMDR9 Community Conference – Agenda<\/u><\/b><\/span><\/div>\n
Morning: Short presentations & discussions<\/i><\/b><\/span><\/div>\n
\u00b7 Welcome and Keynote: <\/b>Overview of LGMDR9<\/span><\/div>\n
\u00b7 Introduction to the Patient Panel<\/b><\/span><\/div>\n
\u00b7 Patient registries<\/b><\/span><\/div>\n
\u00b7 Physiotherapy presentation<\/b><\/span><\/div>\n
\u00b7 Respiratory involvement and management<\/b><\/span><\/div>\n
\u00b7 Cardio involvement and management<\/b><\/span><\/div>\n
\u00b7 How do clinical trials work?<\/b><\/span><\/div>\n
\u00b7 Clinical trial updates<\/b><\/span><\/div>\n
\u00b7 Clinical trial readiness \u2013 scientific research update<\/b><\/span><\/div>\n
\u00b7 Natural History studies<\/b><\/span><\/div>\n
Afternoon: Patient-led breakout sessions<\/i><\/b><\/span><\/div>\n
Group 1: Parents with young children<\/b><\/span><\/div>\n
Group 2: Teenagers & young adults<\/b><\/span><\/div>\n
Group 3: Older adults<\/b><\/span><\/div>\n
Session 1<\/span><\/div>\n
Strategies for school<\/span><\/div>\n
Mental health<\/span><\/div>\n
Healthcare management<\/span><\/div>\n
Session 2<\/span><\/div>\n
Healthcare management & problem solving<\/span><\/div>\n
Strategies for school and college<\/span><\/div>\n
Managing work<\/span><\/div>\n
Plenary session:<\/b> Ask the expert panel Q & A<\/span><\/div>\n
Closure and thanks<\/b><\/span><\/div>\n
Evening: Conference Dinner<\/i><\/b><\/span><\/div>\n

\"<\/p>\n","protected":false},"excerpt":{"rendered":"

Excited to share about the first LGMDR9 (LGMD2I) European Patient […]<\/p>\n","protected":false},"author":3,"featured_media":7777,"comment_status":"open","ping_status":"closed","template":"","meta":{"_acf_changed":false,"_tribe_events_status":"","_tribe_events_status_reason":"","footnotes":""},"tags":[],"tribe_events_cat":[],"class_list":["post-7711","tribe_events","type-tribe_events","status-publish","has-post-thumbnail","hentry"],"acf":[],"yoast_head":"\nLGMDR9 (LGMD2i) European Patient Day - LGMD Awareness Foundation<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"http:\/\/www.lgmd-info.org\/es\/event\/lgmdr9-lgmd2i-european-patient-day\/\" \/>\n<meta property=\"og:locale\" content=\"es_MX\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"LGMDR9 (LGMD2i) European Patient Day - LGMD Awareness Foundation\" \/>\n<meta property=\"og:description\" content=\"Excited to share about the first LGMDR9 (LGMD2I) European Patient […]\" \/>\n<meta property=\"og:url\" content=\"http:\/\/www.lgmd-info.org\/es\/event\/lgmdr9-lgmd2i-european-patient-day\/\" \/>\n<meta property=\"og:site_name\" content=\"LGMD Awareness Foundation\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/LGMDawareness\/\" \/>\n<meta property=\"article:modified_time\" content=\"2024-01-30T20:13:23+00:00\" \/>\n<meta property=\"og:image\" content=\"http:\/\/www.lgmd-info.org\/wp-content\/uploads\/2023\/10\/422875525_10228739962297075_2292391379575522475_n.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"1280\" \/>\n\t<meta property=\"og:image:height\" content=\"640\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:site\" content=\"@LgmdAwareness\" \/>\n<meta name=\"twitter:label1\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data1\" content=\"2 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"http:\/\/www.lgmd-info.org\/event\/lgmdr9-lgmd2i-european-patient-day\/\",\"url\":\"http:\/\/www.lgmd-info.org\/event\/lgmdr9-lgmd2i-european-patient-day\/\",\"name\":\"LGMDR9 (LGMD2i) European Patient Day - 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