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DTSTART;TZID=Europe/Paris:20241204T110000
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DTSTAMP:20241113T161106Z
CREATED:20241113T161057Z
LAST-MODIFIED:20241113T161106Z
UID:59338-1733310000-1733315400@www.rarebeacon.org
SUMMARY:Connecting beyond borders: International outreach
DESCRIPTION:We’re excited to announce our next RareChat!\n			\n			\n				\n				\n				\n				\n			\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				\nIn this 90-minute online session\, we will be focusing on international outreach. \nThis will be an opportunity for rare disease patient leaders to come in and talk about their experiences\, obstacles\, and explore effective strategies for connecting with both patients and patient groups on a global scale. \n			\n			\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				\n			\n			\n				\n				\n				\n				\n			\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				Why international outreach matters\nMany rare disease patient groups begin as national organisations\, which usually aligns with their initial priorities and resources. However\, rare disease patients are spread worldwide\, and for many conditions\, there may only be a handful of patients – sometimes just one or two – in any given country. In many cases\, there are no local support groups for these patients. As a result\, international outreach is crucial to: \n\nFinding patients and connecting with other patient organisations to enhance impact and reduce isolation\nFostering meaningful collaboration across borders\, building a strong\, representative\, and inclusive community\n\nHowever\, expanding internationally comes with challenges\, such as limited funding\, cultural differences\, and logistical hurdles. \n			\n			\n				\n				\n				\n				\n			\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				Join us to discuss\n			\n				\n				\n				\n				\n				\n\nHow other patient groups are successfully extending their reach internationally\nPractical strategies for connecting with patients and organisations beyond national borders\nHow to overcome cultural\, geographical and logistical challenges \nReal-life examples of international outreach efforts\, advice and lessons learnt \n\n\n			\n			\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				\n			\n			\n				\n				\n				\n				\n			\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				Come along to share your opinions and hear from your fellow patient group leaders. Spaces are limited so sign up now! \nPlease note: this is a discussion\, not a training event\, which will go to inform Beacon’s plans for future trainings and resources. This meeting will include live transcription and captions.  \n			\n				Register\n			\n				\n				\n				\n				\n				\n				\n				\n					\n                \n                \n                \n                    \n                \n                \n                \n            \n				\n			\n				\n				\n				\n				\n				What is RareChat?\n			\n				\n				\n				\n				\n				RareChat is a chance to connect informally with other patient group leaders and advocates in the rare disease community. Each session will have a carefully selected theme and a Beacon team member to chair the discussion. \nThe sessions are designed to provide a space for the rare community to connect\, share experiences and ideas informally\, as opposed to receiving training on the topic. \n			\n			\n				\n				\n				\n				\n			\n				\n				\n			\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				\n				Please note: the ticket window may take a few seconds to load. If you’re facing any difficulties\, you can also register here.
URL:https://www.rarebeacon.org/event/connecting-beyond-borders-international-outreach/
LOCATION:Online via Zoom
CATEGORIES:Online,RareChat
ATTACH;FMTTYPE=image/jpeg:https://www.rarebeacon.org/wp-content/uploads/2024/11/International-Outreach-RareChat-1.jpg
ORGANIZER;CN="Beacon for Rare Diseases":MAILTO:projects@rarebeacon.org
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