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X-WR-CALDESC:Events for Rare Diseases International
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DTSTART;VALUE=DATE:20240607
DTEND;VALUE=DATE:20240609
DTSTAMP:20260507T200319
CREATED:20231122T095729Z
LAST-MODIFIED:20240429T142527Z
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SUMMARY:NORD Living Rare\, Living Stronger Patient and Family Forum
DESCRIPTION:The 2024 NORD® Living Rare\, Living Stronger® Patient and Family Forum will be held in Los Angeles\, CA at the Hilton Universal City on June 8. After six years\, we are excited to bring this program to the west coast! This event will bring together the incredible rare disease community for a day filled with learning\, networking\, and relationship building. The Living Rare Forum is an opportunity for people living with rare diseases and their families to come together\, often for the first time\, to gain practical knowledge on how to manage their health and live their best rare lives. \nProgram topics often include sessions about how to advocate for yourself in the healthcare system\, how to coordinate your medical care team\, and how get involved in rare disease research and advocacy. This is a program you don’t want to miss!
URL:https://www.rarediseasesinternational.org/event/nord-living-rare-living-stronger-patient-and-family-forum/
CATEGORIES:Hosted by RDI Member
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DTSTART;TZID=UTC:20240612T080000
DTEND;TZID=UTC:20240614T170000
DTSTAMP:20260507T200319
CREATED:20240408T072338Z
LAST-MODIFIED:20240429T143348Z
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SUMMARY:World Congress for Rare Skin Disorders
DESCRIPTION:The objectives of the congress are: \nTo share knowledge on diagnosis (including pathophysiology and disease classification) and management of rare and complex skin disorders (skin cancers and aggressive tumors\, autoimmune bullous diseases\, complex vascular malformations and tumors\, auto-inflammatory and autoimmune cutaneous disorders\, toxiderma\, ectodermal dysplasia and incontinentia pigmenti\, DNA Repair Disorders & photosensitivity\, monogenic fibrosing diseases\, epidermolysis bullosa and skin fragility\, cornification disorders)\nTo develop a multidisciplinary approach and improve skills to manage common problems in rare and complex skin disorders\nTo know more about the latest research findings and tools in the field of skin biology\, genetics\, therapeutics\nTo learn more about patient engagement and empowerment as well as patient education programmes
URL:https://www.rarediseasesinternational.org/event/world-congress-for-rare-skin-disorders/
LOCATION:Maison Internationale\, Cité Internationale de l’Université de Paris\, 17 Boulevard Jourdan\, Paris\, 75104\, France
CATEGORIES:Global Event
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DTSTART;TZID=UTC:20240627T080000
DTEND;TZID=UTC:20240629T170000
DTSTAMP:20260507T200319
CREATED:20240429T143154Z
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SUMMARY:IFPA conference (World Psoriasis and Psoriatic Arthritis Conference)
DESCRIPTION:Established in 2006\, the IFPA Conference (also known as the World Psoriasis & Psoriatic Arthritis Conference) provides a unique\, cross-specialty platform. Medical and health professionals present frontline clinical research in dermatology\, rheumatology and beyond. Delegates can explore psoriatic disease from different perspectives by networking with patients and industry representatives in attendance. The IFPA conference calls for breakthroughs in research that will improve the understanding of all aspects of psoriatic disease. \nThe next conference will be held 27-29 June\, 2024 in Stockholm\, Sweden. \nThe theme of this Conference is: Uncovering the broad spectrum of psoriatic disease \nPrinciples of the IFPA Conference: \n    Increase global recognition of the seriousness of the diseases and to develop a broader international perspective of psoriatic disease\n    Encourage collaboration on developing future research and advocacy initiatives.\n    Increase awareness by medical professionals and industry of the role of IFPA and its members in assisting the medical advancement in psoriatic disease. \nDeveloping a scientific program for all: \n    Patients in IFPA’s network propose themes in a global survey\n    The Scientific Executive Committee develops the Conference program with patient priorities in focus\n    The Scientific Advisory Board reviews the program for quality assurance\n    The IFPA Conference aligns scientific progress with patient priorities\, unleashing breakthroughs for experts of all backgrounds
URL:https://www.rarediseasesinternational.org/event/ifpa-conference-world-psoriasis-and-psoriatic-arthritis-conference/
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