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UID:4418-1719396000-1719399600@canadianrdn.ca
SUMMARY:RITA Patient-Centered: Social rights of a person with a rare disease and the patient perspective in advocacy\, the case of Malta
DESCRIPTION:The new ERN RITA Patient-Centered Webinar Series is made by the Education Working Group with patients advocates active in the ERN RITA and focuses on the unique needs and challenges faced by immunological rare disease patients and their caregivers. \nFor this next session\, they will have Raquel Castro\, Social Policy and Initiatives Director at EURORDIS-Rare Diseases Europe\, and Sina Bugeja\, Health Promotion Specialist and lecturer at the University of Malta in two presentations: \n\nAccess to social rights: barriers\, key issues and how can you take part to an upcoming Rare Barometer survey.\nThe patient perspective in advocacy: the case of Malta. How to put rare diseases on the European agenda? How can an advocacy committee reach out to MEPs to seek their endorsement?
URL:https://canadianrdn.ca/event/rita-patient-centered-social-rights-of-a-person-with-a-rare-disease-and-the-patient-perspective-in-advocacy-the-case-of-malta/
CATEGORIES:International,Patient Focused,Policy,Research Focused,Virtual,Webinars
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DTSTART;TZID=Europe/Stockholm:20240626T170000
DTEND;TZID=Europe/Stockholm:20240628T180000
DTSTAMP:20260521T094750
CREATED:20240522T220746Z
LAST-MODIFIED:20240531T025542Z
UID:4129-1719421200-1719597600@canadianrdn.ca
SUMMARY:6th Fibrodysplasia Ossificans Progressiva (FOP) Drug Development Forum
DESCRIPTION:The Drug Development Forum (DDF) brings together biotech and pharmaceutical companies\, academic researchers and clinician scientists to collaborate and advance Fibrodysplasia Ossificans Progressiva (FOP) research. It’s an opportunity to discuss emerging FOP data and highlight gaps in our understanding of FOP disease pathogenesis that could offer new therapeutic options. The June 2024 event offers both in-person and virtual attendance options. Due to the content being shared\, only FOP family members who are invited to speak or are members of the International Presidents’ Council or IFOPA’s Research Committee may register. \nWith the first-ever treatment for FOP approved in select countries and five active FOP clinical trials\, there is still an abundance of preclinical research with the potential to be translated into safe and effective new medicines. Molecules advancing drug discovery\, advanced therapeutic modalities and new technologies must continually be explored for their potential to treat understudied signs and symptoms of FOP.
URL:https://canadianrdn.ca/event/6th-fibrodysplasia-ossificans-progressiva-fop-drug-development-forum/
LOCATION:Elite Hotel Tower Marina\, Stockholm\, Sweden
CATEGORIES:Clinical Trials,Conferences,Healthcare,Hybrid,Industry,International,Policy,Research Focused
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