Webbinarium på internationella funktionsrättsdagen: Har respekten för mänskliga rättigheter ökat under 2020?
16 december, kl 15 00 – 16 30
Välkommen till vårt åttonde webinar som handlar om ”EDS och hEDS bakom svår trötthet och hjärninflammation? -ny forskning” Föreläsare är Björn Bragée, smärtläkare och grundare av Bragée Rehab kliniken.
Anmälan, senast 14 dec, med namn och medlemsnummer till anmalan@ehlers-danlos.se
The Ehlers-Danlos Society has been hearing from a growing number of families and individuals sharing their experiences of being diagnosed with a factitious disorder, either imposing ill health on self, or, more typically a parent, on a child. We note that Ehlers-Danlos syndromes are being listed as a condition to be concerned about, in situations where factitious injury or illness is suspected. The Ehlers-Danlos Society would like to understand why this is happening, and what role non-profit organizations and charities can do to support better understanding in our communities, among clinicians, and social services.
We intend to start this process on January 10, 2021 with a virtual awareness event Pediatric EDS and HSD: Exploring The Impact of Misdiagnosis, where the EDS and HSD community, health professionals, organizations, and the general public will hear from members of our community who have been affected by a child’s misdiagnosis: delays in care, mistreatment, allegations of child abuse, and the impact on physical and mental health. This is a free event, accessible to all, globally. Register here.
To identify collaborative ways forward and priorities we will then bring together senior clinicians and executive staff from The Ehlers-Danlos Society, Ehlers-Danlos Support UK, HMSA, other charitable organizations, senior clinicians in Pediatrics, Rheumatology, and Psychiatry, and representation from the Department of Health and Social Services, for an expert roundtable discussion, outlining practical changes which need to be made to support the community.
The conference will take place online via Zoom Webinar. If you have questions please email events@ehlers-danlos.com.
Anmälan görs via länken nedan.
OBS! Detta är på engelska.
Pediatric Concerns in EDS and HSD: Exploring The Impact of Misdiagnosis (regfox.com)
Välkommen till en digital vuxenvistelse, den 23 – 25 februari 2021. Vistelsen riktar sig till personer över 18 år med Ehlers-Danlos syndrom. Du får en unik möjlighet att möta andra i liknande situation, får kunskap och kan utbyta erfarenheter. Dagarna innehåller föreläsningar och diskussioner om de senaste medicinska rönen, psykologiska och sociala aspekter, information om samhällsinstanser. Syftet är att deltagarna ska få ökad kunskap och kompetens om sin funktionsnedsättning och dess konsekvenser för att bättre kunna hantera sin vardag. Läs mer https://www.agrenska.se/vi-erbjuder/kalendarium/vuxenvistelser/ehlers-danlos-syndrom-2021/
The Ehlers-Danlos Society European Learning Conference
Evenemanget flyttat till 24-25 april 2021, läs mer på https://www.ehlers-danlos.com/2020-paris/
Health Professionals Day, april 24 • Community Day, april 25, 2021
Paris, France
Leading experts will present the latest management and scientific information about the Ehlers-Danlos syndromes, hypermobility spectrum disorders, and associated symptoms and conditions.
April 24, is Health Professionals Day. Sessions will be presented in English, and translated into Spanish, French, German, Dutch, and Italian.
April 25, is Community Day. This conference is for those who have EDS and HSD, and their families. Sessions will be presented in English, and translated into Spanish, French, German, Dutch, and Italian.
Register and learn more here.