20 e 21 giugno 2020 in Live Streaming su Youtube, Facebook e Twitter! "Inclusione significa esserci nonostante tutto soprattutto in digitale!" Aniridia Italiana, Aniridia InCloud

Aniridia InCloud italiano


Per celebrare la Giornata Aniridia nel 2020, Aniridia Italiana sta svolgendo le seguenti attività in italiano. Guarda altri video sul canale YouTube di Aniridia Italiana.

To celebrate Aniridia Day in 2020, the Italian Aniridia association is running the following onlne activities in Italian.

See also: Webinars in English, Webinars in español/Spanish

All times Central European (Summer) Time (UTC+2)

Saturday 20 June 2020,

10:30am Wild kids

Online presentation of the European project “Looking out for a school for all: early educational inclusion for students with low vision”,

11:20am Aniridia in House

Online round table on Clinical and rehabilitative management of aniridia patients

3:00pm Work in progress

Online round table on social and work inclusion

9:00pm Reading In the Dark Flash Mob,

When the world comes to a lockdown, cars stop, movement is not allowed and everything around you seems to no longer have the same shape and texture, the only way to stay alive is clinging with all your strength to your mind.A wonderful universe that doesn’t need to see to travel far away. A wonderful engine that just have to listen to get started and that nobody can stop, harness, sedate or block.Hearing the sounds, perceiving the smells, imagining the colors, thinking about the dimensions, idealizing a place … all simple operations if supported by reading.

When we understood that we could not meet face to face as we had planned, we thought of a digital flash mob, as many have done in recent months, filling their homes with the notes of great songs from the past.Well, we are perhaps more intimate and instead of songs we have chosen the words of great authors.

On Aniridia Day, we will invite you to listen in the dark to those words that will give us the courage that we all must have to get back on our feet despite everything, and smile, and fight.

Sunday 21 June 2020

3:00pm The Great Quiz

Oh yes, this is not just a game, not just a way of being together, not just the biggest interactive digital activity you’ve ever participated in. This is an encounter and clash of cultures, it is life that flows through your veins. It is (and we do not say it for fun) the result of hard work and great creativity of a group of young men and women who have put into it their hearts and souls, their desires and commitment, but above all the sparkling joy that only young people can bring. Everyone can participate in the Kahoot quiz, it is easy to do. The questions can be accessed both from mobile and from desktop through a link that will be sent in the chat of a live streaming managed by Matteo, Veronica, Viviana and Edoardo. While the four of them speak as in a radio broadcast, the rest of the participants will answer the questions. The system will then automatically create a ranking and if the participants pass the round, they will receive a link to access the next level. There will be a prize for the winner.

On youTube

Watch pre-recorded interviews with updates on aniridia genetics and on the European project “Aniridia-Net: Networking to address an unmet medical, scientific, and societal challenge”

Programa en PDF

Aniridia y Baja Visión: Conferencia online en español

Con motivo del Día Internacional de la Aniridia (21 de junio), la Asociación Española de Aniridia organiza el 19 de junio una conferencia online en español sobre aniridia y baja visión.

See also: Webinars in English, Webinars in italiano/Italian

La Asociación Española de Aniridia, en su afán de informar y sensibilizar sobre esta patología poco frecuente y con motivo del Día Internacional de la Aniridia, organiza, en colaboración con cuatro profesionales expertos en aniridia, una conferencia online sobre aniridia y baja visión que podrá seguirse en directo en su canal de Youtube.

El próximo viernes 19 de junio a las 18:00 (hora peninsular), especialistas de diferentes ámbitos se unirán para aportar una visión global sobre aniridia y baja visión bajo el título “Aprendiendo más sobre Aniridia y Baja Visión”. Se abordarán cuestiones como genética, patologías oculares asociadas o las mejores ayudas técnicas para personas con aniridia.

Este encuentro es una oportunidad única para que personas afectadas, familiares, pacientes con baja visión e incluso profesionales sanitarios, comprendan mejor qué es la aniridia y la baja visión y accedan a la información de la mano de cuatro grandes profesionales.

La sesión contará además con un tiempo designado a turno de preguntas vía chat para cada ponencia.

Programa

  • Presentación
    Yolanda Asenjo, como presidenta de la Asociación Española de Aniridia, afectada y madre de afectado
  • La importancia del estudio genético en Aniridia.
    Dra. Marta Corton Investigadora en el dpto. de genética y genómica de Instituto de Investigación Sanitaria – Fundación Jiménez Díaz- UAM.
  • Glaucoma asociado a la Aniridia: diagnóstico, y tratamientos medico quirúrgicos.
    Prof. Dr. Miguel A. Teus, catedrático en oftalmología en UAH, Clínica Novovisión.
  • Superficie ocular y catarata en pacientes con aniridia, ¿cuáles son las soluciones más adecuadas?
    Dr. Juan Álvarez de Toledo, oftalmólogo, Centro Oftalmológico Barraquer
  • Baja Visión en aniridia: ayudas para conseguir la máxima autonomía personal.
    D. Miguel guzmán, óptico-optometrista, Centro de Baja Visión Ángel Barañano.

Acerca de los ponentes

  • Dr. Juan Álvarez de Toledo: Subdirector Médico y Coordinador del Departamento de Segmento Anterior y Cirugía Refractiva del Centro de Oftalmología Barraquer. Asimismo, es responsable del departamento de Conservación de Córneas del Banco de Ojos para tratamientos de la ceguera.
  • Dra. Marta Corton: Doctora investigadora en el departamento de genética y genómica de IIS – Fundación Jiménez Díaz (IIS-FJD-UAM). Ganadora del premio FEDER con el proyecto “Caracterización genética de la Aniridia en España mediante estudios genómicos y experimentales”
  • Prof. Dr. Miguel Ángel Teus: Coordinador médico de la clínica de oftalmología Novovisión y catedrático en la Universidad de Alcalá de Henares.
  • D. Miguel Guzmán: Óptico – Optometrista especialista en Baja Visión, es Director del Centro especializado en Baja Visión Ángel Barañano.

Enlace a la YouTube Conferencia

Aniridia and low vision online SPANISH conference

Wanting to inform and raise awareness on this rare disease and on the occasion of international Aniridia Day (21 June), Aniridia Spain is organising, in collaboration with four expert aniridia professionals, an online conference on aniridia and low vision that can be followed live on their YouTube channel.

On Friday, June 19 at 6:00 p.m., specialists from different areas will come together to provide a global perspective on aniridia and low vision under the title “Learning more about Aniridia and Low Vision.” Topics will include as genetics, associated eye diseases or the best technical aids for people with aniridia.

This meeting is a unique opportunity for affected people, family members, patients with
low vision and even healthcare professionals, to better understand what aniridia and low vision mean and get information from the four great professionals. The event will also have a designated time for questions via chat for each session.

Agenda

  • The importance of genetic study in Aniridia.
    Dr. Marta Corton, PhD. Researcher in genetics and genomics.
  • Glaucoma associated with Aniridia: diagnosis and medical-surgical treatments.
    Prof. Dr. Miguel A. Teus, ophthalmologist
  • Ocular surface and cataract in patients with aniridia, what are the most appropriate solutions? 
    Dr. Juan Álvarez de Toledo, ophthalmologist
  • Low Vision in aniridia: aids to achieve maximum personal autonomy.
    Mr. Miguel Guzmán, optical-optometrist

About the speakers

  • Dr. Juan Álvarez de Toledo: Medical Deputy Director and Coordinator of the Department of Anterior Segment and Refractive Surgery of the Barraquer Ophthalmology Center. He is also responsible for the Cornea Conservation department of Banco de Ojos for blindness treatments.
  • Dr. Marta Corton: Research PhD in the Department of Genetics and Genomics at IIS – Fundación Jiménez Díaz (IIS-FJD-UAM). Winner of the FEDER award with the project “Genetic characterization of Aniridia in Spain through genomic and experimental studies”
  • Prof. Dr. Miguel Ángel Teus: Medical coordinator of the Novovisión ophthalmology clinic and professor at the University of Alcalá de Henares.
  • Mr. Miguel Guzmán: Optician – Optometrist specialized in Low Vision, is Director of the Center specialized in Low Vision Ángel Barañano.

Conference on YouTube

Webinars 2020

Enjoy free, informative, online presentations and discussions about aniridia on 21 June 2020.

Celebrate annual international Aniridia Day and come together virtually to support each other. We have fantastic speakers, plus time to ask questions and chat with people also affected by aniridia.

See also: Webinars in español/Spanish, Webinars in italiano/Italian

Webinars in English

Anyone around the world is welcome to join on Zoom, for approximately 2 hours from:

  • 14:00 British Summer Time – BST
  • 13:00 Greenwich Meantime – UTC
  • 15:00 Central European Summer Time – CEST
  • 10:00 US Eastern Daylight Time – ESDT   

Agenda

  • Open discussion for all attendees
  • Dry Eye Disease and Aniridia
    Colin Parsloe will talk about the causes and treatments for the gritty sore sensation many feel in their eyes.
  • “But you don’t look blind?” Growing up with an invisible disability
    Charles Bloch will talk about challenges and successes at university and finding jobs with aniridia.
  • Annual General Meeting 2020 of Aniridia Network
    Reports, financial accounts, questions and comments.
  • Achievements with aniridia
    Sinead Kane will give a motivating talk about becoming a lawyer, multi-marathon athlete and world record holder – with aniridia.  
  • Success at Aniridia Centre  
    Dr Natella Sukhanovain will show how she has created an effective centre of excellence at the Research Institute of Paediatrics in the Central Clinical Hospital of the Russian Academy of Science. 
  • Open conversation for all attendees

Don’t miss it. You can only take part if, in advance you:

Register to attend.

We will then send you an email with the web address to use a few days before the event.  

If you have any questions or difficulty registering contact us at info@aniridia.org.uk for help.

We make no promises about publishing recordings afterwards – so tune in live to take part!

Tweet about this event using: @AniridiaNetUK@AniridiaDay #ANUKconf.

These webinars are organised by Aniridia Network in the United Kingdom but are open to all with the exception of the Annual General Meeting (AGM). Anyone can watch this session, but only UK and Irish members of Aniridia Network can speak.

Russian/русский

21 июня 2020 года, в Международный День Аниридии, мы предлагаем  вам присоединиться к бесплатным, информативным  онлайн-презентациям и дискуссиям, посвящённым аниридии .Во время презентаций вы сможете задать свои  вопросы докладчикам, а также  пообщаться с пациентами из разных стран.Презентации будут длиться в течение 2-х часов на платформе Zoom . Время проведения:

План презентаций:  13:00 – по Гринвичу – UTC 

  • «Болезнь сухого глаза и аниридия» . Колин Парсло 
  • «Но ты же не выглядишь слепым?»  Что значит расти  с «невидимой» инвалидностью.  Чарльз Блох расскажет о своих проблемах и успехах во время учебы в университете и поиске работы с аниридией. 
  • Ежегодное общее собрание британской ассоциации помощи пациентам с аниридией  «Aniridia Network». Отчеты, вопросы и комментарии. 
  • «Чего я смог достичь с диагнозом аниридия».  Шинид Кейн расскажет о том, как стал юристом, спортсменом- марафонцем и обладателем мирового рекорда  с диагнозом аниридия. 
  • «Опыт работы в Российском Аниридийном Центре». 

Доктор Нателла Суханова из России  расскажет о методах работы и передовом  опыте помощи пациентам с аниридией в Российском Аниридийном Центре   при НИИ педиатрии  ЦКБ РАН. Открытый разговор- диалог  для всех участников. Вы можете принять участие в этих онлайн беседах , если заранее зарегистрируетесь , нажав на  зелёный банер : «Register to attend”.Затем мы отправим вам электронное письмо с ссылкой на мероприятие  за несколько дней до него.

 Если у вас есть какие-либо вопросы или проблемы с регистрацией, свяжитесь с нами по адресу info@aniridia.org.uk.

Мы не даем никаких обещаний о публикации записей после прямого эфира – так что найдите время и присоединитесь к нам 21 июня 2020 года!

@AniridiaNetUK@AniridiaDay #ANUKconf.

 Эти вебинары организованы ассоциацией помощи пациентам с аниридией    «Aniridia Network» в Великобритании и Ирландии , но открыты и доступны для докторов и пациентов с аниридией со всего мира.