Beiträge

AniridiaConference 2021
Wir sind hocherfreut Ihnen mitzuteilen, dass das Buchungssystem für die Europäische Aniridie Konferenz jetzt eröffnet ist.
Sie wird am 31. Juli und 1. August 2021 stattfinden!

Finden Sie mehr heraus und schreiben Sie sich ein unter 2020.aniridiaconference.org

Teilen Sie diese Einladung gern weiter, nutzen sie #EuroAniridiaConf in den Sozialen Medien.

Die Konferenz wird Forschung und klinische Praxis zusammenbringen, sowie die Einbeziehung der Betroffenen.

Highlights sind u. a.:

– Reden von Tony Moore, Cheryl Gregory Evans, Dominique Brémond-Gignac, Christina Grupcheva, Russell Foster,
David Price, Daniel Aberdam, Neil Lagali, Ali Djalilian, Julie Daniels, Mariya Moosajee, Steve Tuft, Kelly Trout und vielen anderen…
– Betroffene werden Ihre Lebensgeschichte mit Aniridie teilen
– Virtuelles Netzwerken für alle Anwesenden
– Junge Wissenschaftler werden in einem Wettbewerb für einen 100 Pfund Preis kurze Reden halten
– „Zusammenarbeiten“ – Runder Tisch mit Details zu den Programmen „ERN-Eye“ und „Aniridia COST“
– Workshop für Patientenvereinigungen und Kontaktpersonen – „Wir bauen eine unterstützende Gemeinschaft“
– Jugendtreffen
 
Augenärzte, Forscher, Genetiker und Betroffene mit ihren Familien sowie Angehörigen sind unsere Zielgruppe.
Durch das Teilen dieser Erfahrungen und Fortschritte rund um Aniridie erhoffen wir uns eine stärkere Gemeinschaft und Unterstützung für sowie untereinander.
Aniridie zu verstehen ist schwierig aufgrund der geringen Patientenzahl (1 aus 47.000), es ist aber hoch variabel, kompliziert und individuell in seinen Ausprägungen.
Die Europäische Aniridie Konferenz bringt Experten aus aller Welt zusammen, es ist der produktivste Weg, um neue Wege und Therapien zu entwickeln. Unsere Zusammenkunft hilft, Patienten und Betroffenen zu helfen, durch bessere Behandlungen und ein Miteinander.
Es wird 2 Tage voller Präsentationen und Netzwerken geben, bei denen Wissen untereinander geteilt wird. Betroffene werden Ihre Sicht teilen und direkt mit Ärzten, Forschern und Wissenschaftlern auftreten. Auch nicht Augen-spezifische Aspekte, wie Übergewicht, Diabetes, neurologische Defizite, etc. werden erörtert.
Das Netzwerken in virtuellen Räumen wird teils moderiert, teils offen für alle sein.
 
Wir hoffen, Sie nutzen die Chance und werden wie wir viel lernen und erfahren. Stellen Sie Ihre Fragen, sprechen Sie mit Betroffenen und Experten aus aller Welt, werden Sie selbst zum Experten!



+++ ORIGINALARTIKEL +++

European
                                                          Aniridia
                                                          Conference
                                                          logo
We are delighted to tell you that booking for the European Aniridia Conference is now open!
It will take place online during 31 July & 1 August 2021 and will be amazing!
Find out more and sign up for free at 2020.aniridiaconference.org
Pass this invitation on to anyone you think may be interested. Share on your social networks using #EuroAniridiaConf Print and display this A4 poster too. You could also alert professional publications to our press release.
The event will combine excellence in aniridia research and clinical practice, plus patient engagement.
Highlights include:Talks by: Tony Moore, Cheryl Gregory Evans, Dominique Brémond-Gignac, Christina Grupcheva, Russell Foster, David Price, Daniel Aberdam, Neil Lagali, Ali Djalilian, Julie Daniels, Mariya Moosajee, Steve Tuft, Kelly Trout and many morePatients telling their stories of life with aniridia42 clinics with top UK consultants for patients/relatives from under-represented countriesVirtual networking room for all attendees
Early career scientists giving very short talks in a competition for a £100 prize„Working Together“ roundtable including details of ERN-Eye & Aniridia COST“Building a Supportive Community“ workshop for patient associations and contact people. Young Aniridics meet-upAniridia Europe achievements and plans review5 posters by researchers from Russia and the UK.Professionals such as: ophthalmologists, researchers, vision scientists, and geneticists, plus people who have aniridia and their relatives are the target audience.
Presenter
                                                          pointing at a
                                                          large eye on
                                                          screen
By sharing the insights of those developing treatments and living with aniridia, it’s goal is to upskill each other and strengthen our medical and patient communities. This will enable us together to prevent sight loss and deal with aniridia’s other effects.
Understanding aniridia is challenging, due to the scattered patient population (1 in 47,000), its highly variable impact and complications of linked conditions.
The European Aniridia Conference (EAC) innovatively addresses this by bringing together different kinds of the world’s top experts. It’s the most productive path to developing new disease management and therapies. It accelerates the development of better treatments and hugely improves patient care.
There will be 2 days of presentations and networking to share knowledge on how aniridia affects the different parts of the body. Each section will be introduced by a person with aniridia giving details of their experiences. Non-eye aspects of aniridia will be addressed, as patients are known to have problems with weight control, diabetes and possibly neurological/brain-related deficits too.In the virtual networking room alongside the presentations, delegates can discuss mutual interests and review the talks. Some conversations will be facilitated, others free flowing.
The last part of the conference will focus on adult patients and parents of children with aniridia. 2 more adults with aniridia will describe their life with low vision in depth. Aniridia Europe will discuss their future plans. Leaders of established national patient associations will advise those who aspire to build a patient group in their area.
Laptop
                                                          with person on
                                                          screen
„The EAC is highly valued because it brings together fundamental scientific research and clinical practice, while at the same time providing opportunity for friendly and open engagement with patients. The meeting will be a vibrant and informative event, especially as the critical mass of clinicians and scientists rising to meet the challenges of understanding the role of genetic mutation in aniridia all the way through to clinical trials of novel therapies is growing”

Julie DanielsProfessor of Regenerative Medicine & Cellular Therapy at UCL Institute of Ophthalmology

Julie
                                                          Daniels
Likewise, a researcher declared: “What I like most about these events is sharing and talking with patients and families.”
At previous conferences patients enjoyed: “learning new things and meeting amazing professionals and others in similar situations.” 
Parents of children with aniridia valued:“the chances to meet others, making connections and touching base with professionals interested in aniridia.”We hope you will join us for what promises to be a superb learning opportunity. Don’t miss the chance to ask questions to live and speak to the best informed people around the world about aniridia – and become one of them yourself! Find out more and sign up for free at 2020.aniridiaconference.org
Panel in
                                                          front of
                                                          screen at
                                                          European
                                                          Aniridia
                                                          Conference
                                                          2018
European
                                                          Joint
                                                          Programme Rare
                                                          Diseases
This Networking event has received funding from the European Union’s Horizon 2020 research and innovation programme under the EJP RD COFUND-EJP N° 825575.

European
                                                          Union
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