Tag: webinars

Spanish webinars 2020

by Aniridia Day, posted in 2020, Events, Spanish/español, Webnars

On 19 June, the Spanish Association of Aniridia held an online confernce titled “Learning more about Aniridia and Low Vision”. Four experts talked about aspects and pathologies relating to aniridia and low vision.

It had 250 live views and more than 85 simultaneous viewers from several Spanish-speaking countries.

Screenshot of Yolanda and other speakers
Recording on YouTube

It began with Yolanda Asenjo, President of the Spanish Association of Aniridia, who spoke of the importance of early diagnosis, early stimulation in babies, and access to a genetic test. She also offered hope to those parents who have just had a son or daughter with aniridia, explaining her own experience as a person with aniridia and mother of an affected child.

The first speaker was Marta Corton, PhD. Researcher in genetics and genomics at the
Fundación Jiménez Díaz Hospital.

The second speaker was Miguel Ángel Teus, PhD. ophthalmologist. Dr. Teus explained the characteristics of glaucoma, the evolution of the tests to detect it and the existing surgeries.

Afterwards, it was the turn of Juan Álvarez de Toledo, ophthalmologist, who in his presentation “Ocular surface in congenital Aniridia”, He spoke of the main pathologies that patients with aniridia usually develop, such as dry eye or progressive limbar insufficiency, its consequences and possible treatments to be carried out.

To close the conference Miguel Guzmán, optician-optometrist, explained the concept of low
vision, still unknown by many people, and spoke of the different methods to achieve greater
personal autonomy.

The event ended with a video of some members of the Spanish Aniridia Association explaining what aids they use, from filters to refreshable braille displays.

The Spanish Association of Aniridia want to expres our gratitude to the speakers and
participants. We believe that this format has been able to resolve doubts from patients
who, in their day-to-day life, may not have access to information about their pathology.

The conference is now available in YouTube with automatic Spanish subtitles.

Lea este artículo en español.

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

by Aniridia Day, posted in 2020, Events, Italian/Italiano, Translations, Webnars


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

by Aniridia Day, posted in 2020, Spanish/español, Translations, Webnars

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

Programa conferencia aniridia 2020
Descarga el programa en PDF
  • 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

by Aniridia Day, posted in 2020, Russain/русский, Webnars

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. 

Webinars 2018

by Aniridia Day, posted in 2018, Events
Coffee cup, laptop with a person on screen, notepad and pens

We had a wonderful series of online presentations on Aniridia Day 21 June 2018.

View the webinar subjects and schedule.

People around the world gave live talks about aniridia for people to watch on computer wherever they were and ask questions too.

The presenters were an amazing mix of experts including people with aniridia, parents and doctors, from Russia to Spain.

We recorded most of the webinars and published them later on the Aniridia Day YouTube channel.

People could also join in by doing a impromptu webinar themselves, using systems such as Facebook Live, YouTube Live or Periscope. An example this is: James’s Facebook Live for Aniridia Day 2017.

Appeal for people to talk online about aniridia

by Aniridia Day, posted in 2018
Coffee, laptop, notepad, pencilsThe next Aniridia Day is on 21 June 2018.
Could you speak at an online event to celebrate the day and improve understanding of aniridia? Do you know a patient, parent or doctor who would?
Our plan this year is to hold several webinars about aniridia during the day, that people can watch or take part in wherever they live.
This could take various forms (perhaps followed by questions from the audience):
  • presentation
  • interview
  • panel debate
Another option is discussion on a subject that anyone can take part in. This would still need a someone to lead and manage the session.
The subjects could be narrowly or broadly defined. The target audience could also be small or large: any parents, patients, doctors, or people in a particular country or having a specific surgery related to aniridia.
You can choose the local time and language of the session.
Here are some ideas, but we want to you to invent your own too:
  • a person with aniridia hosting a ‘Ask me anything’ or demonstrating a screenreader
  • an open chat for anyone affected by aniridia in Australia
  • a talk and answers to questions by a aniridia doctor in Russian
  • a semi-scripted conversation between two parents
  • simultaneously watching of a YouTube video followed by questions/debate

An example of the first idea is James’s Facebook Live for Aniridia Day 2017.

We plan you use either join.me or appear.in internet conferencing systems . You will just need a computer or a smartphone. If you have a webcam you could use it, or share your screen, or just use audio. We will send you instructions in advance.
We need people like you, all around the world to run these webinars
If you are interested in being a speaker/host write to contact@aniridiaday.org as soon as possible, what you want the subject and format and time (GMT) to be, so we can advertise it.