Collage of 35 piece of art

Art competition results

31 children around the world created lovely pictures about aniridia to celebrate Aniridia Day 2020. Now you can see the art and who won the international competition.

The 35 entries included paintings and drawings done with pens and pencils. They are all beautiful. The artists all either have aniridia or a close relative who does. They came from 8 counties: Argentina. Egypt, Spain, Russia, UK, Ukraine, Uruguay and the USA.

A slideshow of all the designs is below. Please like, comment on and share them with friends and family on your own social media accounts.

JUDGING

An international team of judges had the tricky duty of choosing which entries were best.

  • Tatyana Ghali, member of Russian Academy of Artists, Head of “Everyone can draw.” studio 
  • Rasha Amin, an Italian contempory artist and teacher
  • Luana Schena, Switzerland, a student with aniridia
  • Lucia Mosquera, Spain, a person with aniridia

It was really difficult for the judges as all the pictures were really wonderful. They were really pleased to see the work of kids and their parents from soman countries. It was an absolutely fantastic effort and congratulations to everyone

Galina Gening, Competition Coordinator

RESULTS

The judges simply combined their scores, so there are a few joint rankings. Everyone who entered has received a certificate and should be very proud.

1-3 YEARS

  1. Artyom, Russia
  2. Sabrina, UK
  3. Arina, Russia

4-6 years

  1. Zarina, Russia
  2. Omar
    Abdou, Egypt
    Madison, UK
  3. Julianna, Ukraine

 7-8 years

  1. Andrey, Russia
    Elmaz, Russia
  2. Esenia, Russia
    Valentina, Russia
  3. Victoria, Russia

9-10 years

  1. Jano, Argentina
  2. Zahar, Russia
    Eliza, Egypt
  3. Esenia, Russia
    Aleksey, Russia

11-13 years

  1. Uliana, Russia
  2. Laura,
    Delfina
  3. Angelina, Russia

14-18 years

  1. Katerina, Ukraine
  2. Christianna, USA

The judges also gave awards to the participants for special features of their entries.

  • Most educational: Mylie, UK
  • Most inspiring: Jakub, UK
  • Happiest draw: Bruno, Spain
  • Best idea: Ismae, UK and Natalia, UK
  • Masterful composition: Alena, Russia
  • Excellent submission: Adgieva, Russia

We are extremely grateful to Galina, President of Aniridia Russia for championing this global contest. Los of thanks too as well to the judges and others who gave up so much of their time to make it happen.

Russian: Результаты Международного  Конкурса Рисунков , приуроченного Дню Аниридии 

В конкурсе рисунков, посвящённого Дню Аниридии приняли участие дети из 8 стран мира . 31 маленький художник  прислал на конкурс прекрасные картины на тему аниридии и жизни с этим заболеванием. 
 Всего на конкурс было представлено  35 рисунков , выполненных красками и карандашами.  Все юные художники сами являются пациентами с аниридией или их близкий родственник ( брат , сестра) имеет данное заболевание .   Рисунки на конкурс  мы получили из Аргентины, Египта, Испании, России, Великобритании, Украины , США и Уругвая . 
Сами рисунки Вы можете увидеть ниже . Пожалуйста, ставьте лайки, комментируйте и делитесь этой новостью  со своими друзьями и близкими в социальных сетях и личных сообщениях.
 СУДЕЙСТВО. 
 У международной команды судей была непростая задача, так как все присланные рисунки были великолепны . Члены Международного Жюри: 1. Татьяна Гали, художник, член Российской академии художников , руководитель студии «Рисовать могут все». 2. Раша Амин, итальянская художница, преподаватель современного искусства . 3. Луана Щена – студентка из  Швейцарим, пациент  с аниридией.  4. Люсия Москера, Дефектолог из  Испании, пациентка с аниридией. Организатором и координатором конкурса выступила Галина Генинг, президент Межрегионального Центра поддержки больных аниридией «Радужка». 
РЕЗУЛЬТАТЫ. 
Возрастная категория от 1 года до 3 ЛЕТ: 
 1 место – Артём из России  2 место – Сабрина из Великобритании  3 место – Анна из России 
 Возрастная категория от 4 до 6 ЛЕТ: 
 1 место – Зарина из России  2 место разделили Омар из Египет и  Мэдисон из Великобритании  3 место- Юлианна из Украины 
Возрастная категория 7 до 8 ЛЕТ
 1 место разделили Андрей  и Элмаз  из  России  2 место разделили  Есения и Валентина из России  3 место – Виктория из России 
 Возрастная категория от 9 до 10 ЛЕТ: 
 1 место – Яно из Аргентины  2 место разделили Захар из России  и  Элиза из Египта 3 место разделили Есения и Алексей из России 
Возрастная категория от 11 до 13 ЛЕТ: 
 1 место – Ульяна из России 2 место разделили Лаура из России и Дельвина из Уругвая  .  3 место – Ангелина из России  Возрастная категория от  14 до 18 ЛЕТ:
 1 место – Катерина из Украина 2 место – Кристианна из США Судьи также наградили участников в особых номинациях . 
«Информативный рисунок» : Майли, Великобритания«Самый  вдохновляющий рисунок» : Якуб, Великобритания«Самый  позитивный рисунок» : Бруно, Испания «Лучшая идея рисунка» : Исмае, Великобритания и Наталья, Великобритания«Прекрасная композиция»: Алена, Россия «Отличная подача идеи»: Аджиева, Россия
Мы чрезвычайно благодарны Галине Генинг , президенту Межрегионального Центра поддержки больных аниридией «Радужка» за то, что она организовала этот глобальный конкурс. Огромное спасибо также судьям и участникам , которые приложили усилия и сделали это прекрасный конкурс возможным . Абсолютно все участники конкурса и даже судьи получили сертификаты конкурса. 

Man and boy both wearing sunglasses and cap waving at the camera

Film competition results

We had a phenomenal response to our call for people affected by aniridia to film short messages celebrating Aniridia Day 2020. We can now show them off in this compilation and announce the winners of the international competition.

All the entries are fabulous. Very very well done to everyone who appeared in or produced the videos. It is fantastic to see so many people getting involved from so many countries. Please like, comment on and share the video with friends and family on your own social media accounts.

Statistics for the submissions:

  • 43 participants
  • from 6 months to 40 years old
  • appeared in 51 messages
  • from 19 countries
  • in 25 languages

Judging

An international team of judges had the difficult task of deciding which entries were best entries.

  • Markova Ekaterina , a Russian filmmaker
  • Luana Schena, Switzerland, a person with aniridia
  • Lucia Mosquera, Spain, a person with aniridia

I found it very impressive to see all the effort individuals and families from all over the world put into their contributions. Although we had to make a ranking in the end – not an easy task – I feel like the winner is our whole aniridia community, that brought together this amazing collection of videos. I‘m really excited to have been a part of this project and be a part of this community.

Luana

Results

The judges simply combined their scores, so there are a few joint rankings.

0-1 years

  • Jade, France
    Rembie, Singapore
    Sujyan, Armenia

3-5 years

  1. Madison, UK
  2. Rhiannon, UK
  3. Maryam, Russia
    Augustas, Lithuania
    Clara, Argentina

6-8 Years

  1. Ilya, Russia
    Arseny, Russia
    Andryushina, Russia
  2. Andrey, Russia
  3. Ilya, Ukraine

9-11 years

  1. Eliza, Egypt
  2. Lucia, USA
    Jano, Argentina
    Mylie, UK

12-14 years

  1. Emir, Kazakhstan
  2. Greta, Lithuania

14-18 years

  1. Alma, Norway
  2. Viviana, Italy
  3. Elithabeth, Russia

18+ yeras

  1. Panova, Russia
  2. Giorgio, Italy
    Matteo, Italy
  3. Luana, Switzerland
    Sanna

The judges also wanted to give awards to the partipicants for special features of their videos.

Andryushina wearing traditional green and black clothes of Bashkortostan
Andryushina in traditional Bashkortostan dress
  • Great costume:
    • Andryushina, Russia Bashkortostan
    • Arina, Russia
    • Eliza, Egypt
    • Ilya, Ukraine
  • Most multilingual participant:
    • Kaj
    • Eliza, Egypt
  • Most impressive camera work:
    • Jade, France
    • Clara, Argentina
    • Aniridia Belgium
  • Best smile :
    • Rembie, Singapore
    • Zinovia. UK
    • Remi, UK
  • Youngest:
    • Samat, Russia Tatarstan
  • Cutest child:
    • Sujyan, Armenia
    • Maelynn, Netherlands
  • Exellent submission:
    • Mona, Egypt
    • Dylan, Belgium
    • Chernyaeva, Russia
    • Rydevsky, Belarus
    • Natasha, Kazakhstan
    • Karim, Russia Tatarstan
    • Dan, Finland

We are truely grateful to Galina, President of Aniridia Russia for leading the organisation of this global contest. Big thanks as well to the judges and others who gave up so much of their time to make it happen.https://youtu.be/b6G1bBHiXP4

Russian

Конкурс видео – поздравлений к Международному Дню Аниридии .

Мы получили феноменальный отклик на наш призыв к пациентам с аниридией снять короткие видео-поздравления к Международному Дню Аниридии 2020 года. На конкурс было прислано  

43 работы из. 19 стран , записанные на. 25 различных языках. Возраст  конкурсантов был от 6 месяцев до 40 лет .  Все полученные на конкурс работы  просто великолепны! Потрясающе, что в  этот процесс оказалось вовлечено так много людей из разных стран, говорящих на разных языках.  Пожалуйста, оставьте свой комментарий, поделитесь этим  видео с друзьями и  семьёй , а также в своих социальных сетях.
Все видео-работы оценивала  международная команда судей, перед которой  стояла непростая задача решить, какие видео  оказались лучшими.Судьи: 

  • Маркова Екатерина, Россия , руководитель киножурнала «Мандарин» 
  • Луана Щена, Швейцария, пациентка  с аниридией, студентка
  • Люсия Москера, Испания, пациентка  с аниридией, специалист- дефектолог 


 Меня очень впечатлило, как различные люди и семьи со всего мира вкладывали  свои усилия в этот процесс .  Несмотря на то, что нам пришлось все-таки  выбрать победителей , я ощущаю, что победителем стало все наше сообщество пациентов с аниридией .  Я очень рада, что смогла стать   частью этого  удивительного проекта

Луана

РЕЗУЛЬТАТЫ: 

 От 3 до 5 ЛЕТ:

  1. Мэдисон из Великобритании
  2. Рианнон из Великобритании 
  3. разделили  Марьям из России , Чеченской  Республики,   Август из Литвы  и  Клара из Аргентины 

От  6 до 8 ЛЕТ:

  1. разделили  Илья, Арсений и Есения  из России  
  2. Андрей из России 
  3. Илья из Украины

От  9 до 11 ЛЕТ: 

  1. Элиза, Египет 
  2. разделили Ян  из Аргентины,  Майли из Великобритании и Люсия из США 

От12 до 14 ЛЕТ: 

  1. Эмир из Казахстана  
  2. Грета из Литвы 

От 14 до 18 ЛЕТ: 

  1. Алма из Норвегии  
  2. Вивиана из Италии  
  3. Елизавета из  России 

От 18 лет и старше  : 

  1. Татьяна из России 
  2. разделили Джорджио  и  Маттео Италии 
  3. разделили   Луана из Швейцарии и Санна из Финляндии .  

Судьи также выбрали победителей в различных номинациях. 
Прекрасный костюм :

 Есения , Россия Башкортостан Арина, Россия, Чувашия Элиза, Египет Илья, Украина
 Самый многоязычный участник:Элиза, Египет Кай, Швеция 
 Лучшая видеосъёмка : Джейд, Франция Клара, Аргентина Группа из  «Аниридия Бельгия»
 Лучшая улыбка: Ремби, Сингапур Зиновия , Великобритания Реми, Великобритания
 Самый маленький участник: Самат, Россия , Татарстан
 Самый милый ребенок: Суджян, Армения Мейлин, Нидерланды
 Отличная подача материала : Мона, Египет Дилан, Бельгия Вика, РоссияМаксим, Беларусь Наташа, Казахстан Карим, Россия,  Татарстан Дан, Финляндия
 Мы искренне благодарны Галине Генинг, президенту Межрегионального Центра Поддержки больных аниридией «Радужка» за организацию и проведение  этого глобального конкурса.  Большое спасибо также судьям и другим людям , которые потратили свое время  и приложили усилия для того , чтобы это произошло.

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

Art and film competitions

These competitions are now closed. Read who took part and who won in the:

We called on people to make something creative relating to aniridia and enter it into an international competition to celebrate Aniridia Day 2020.

The artist needed to be a person with aniridia or one of their friends or relations.

Artwork competition

  • Wanted: Photographs or scans of a drawing, painting, photograph, model or other creation about or relating to aniridia
  • Eligiblity: People up to 18 years old who have aniridia or one of their friends or relations
  • Closing date: Saturday 20 June 2020
  • 1st 2nd and 3rd place winners chosen in the following age groups: 3-5, 6-8, 9-11, 12-14, 14-18.

FIlm competition

  • Wanted: Imaginative short videos including a message, in your own langauge, similar to this:

    “My name is XXXX, I am Y years old, I live in ZZZZ, I have aniridia.
    I want to congratulate patients and doctors all over the world on Aniridia Day!
    We are rare but together we are strong”
  • Eligiblity: People of any age who have aniridia or one of their friends or relations
  • Closing date: Thursday 18 June 2020.

The competitions was run by Iris the Interregional Center for Supporting Patients with Aniridia, in Russia. The judges for each competion included:

  • Tatyana Ghali, a Russian artist
  • Rasha Amin, an Italian artist
  • Ekaterina Markova, a Russian flimmaker
  • Luana Schena, Switzerland
  • Lucia Mosquera, Spain
Psycadelic painitng featuring an aniridic eye

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. 

#AniridiaAids

What visual aids do you use and why, because of aniridia? Mark Aniridia Day on 21 June 2020 with pictures/videos along with text on social media to explain what is needed to get things done. Use #AniridiaAids and tag @AniridiaDay to get maximum views.

Baseball cap, sunglasses, monocular, high visibility keyboard, signature guide, magnifying glasses, Amazon Echo

Aniridia affects people in different ways. We want to help everyone understand the accessories, gadgets, technology, people and animals that enable us to do all the wonderful the things we Can Do With Aniridia.

Explain to your friends and followers, the difficulties you (or your children) have, then the difference your aids make to your life. Give others with aniridia new ideas for aids that could help them be a Shining Success.

Eleanor with her guide dog and Aniridia Day leaflets

On Facebook, Twitter or Instagram, tell the world about your #AniridiaAids such as:

  • hats and sunglasses
  • monocular
  • screen readers/magnifier/high contrast software
  • assistant or relative
  • guide dog

Always mention @AniridiaDay and use the hashtag #AniridiaAids

On Facebook: join and post in the public Aniridia Day group first then share it on your newsfeed, so that the aniridia community as well as your friends get to see, Like and comment on it.

 

Check out the #AniridiaAids others have posted

Also use our online shop, social media badges and posters to help celebrate.

If you run an aniridia association or social media group, please translate and adapt these instructions and share with as many people as you can to encourage them to participate in Aniridia Day 2020.

Tell us what you are planning/have done and we can help promote it.

#CanDoWithAniridia campaign

For Aniridia Day 2019 we focused on ‘possibilities’ to improve understanding of aniridia and social inclusion.

We asked people to put on social media a photo/video with an explanation that shows what can be done as a job, hobby, sport or education – while living with aniridia. The hashtag was #CanDoWithAniridia

Here is a selection of videos from the day.

Plans for Aniridia Day 21 June 2019

For this year’s Aniridia Day, we want you to focus on possibilities to:

  1. improve understanding of aniridia and social inclusion
  2. support people (with children) with aniridia
  3. raise funds for the European Aniridia Conference 2020 in the UK
  4. empower national aniridia associations

Check what your local aniridia association is planning but here are the basic ideas.

#CanDoWithAniridia

 

Woman rock climbing
What Jessica #CanDoWithAniridia

On social media share a photo/video with an explanation that shows what can be done as a job, hobby, sport or education – while living with aniridia.

Tag your Twitter/Instagram/Facebook posts with: #CanDoWithAniridia and @AniridiaDay
On Facebook: join and post in the public Aniridia Day group.

Like, comment on and share what others post too.

Highlight the posts to researchers, medical organisations, celebrities, sports people etc. and ask them to share the posts with their followers

Events

Group photo of three adults and three children holding Aniridia Day postersGathering with others living with aniridia is lots of fun. Take the initiative: pick a time and place and advertise it for people to come to together talk with each other.

You can also organise a stall or presentation or other activities to educate people about aniridia in: schools, libraries, hospitals or other public places.

Ideally, these should happen on Aniridia Day but other dates are good too.

Remember to post a picture on social media about what you did too, tagging @AniridiaDay

Fundraising

The 5th European Aniridia Conference is planned to be in London on 14-16 August 2020.

It will bring together the world’s top aniridia doctors and researchers to improve treatments. The benefits will be felt by all patients worldwide, through the impact of clinical guidelines, scientific articles, and research projects.

Aniridia Network urgently needs £40,000 to make it possible Please do something to help reach that target such as running a cake stall or make a donation. Profits and donations can be paid in to the European Aniridia Conference 2020 fund.

Cake stallperson in stocks having wet sponges thrown at them

Aniridia associations can also make appeals or organise activities to raise funds for their own purposes. One idea is to collect artwork by children with aniridia and sell them online.

Volunteer

There are many possible ways to give practical help to your local aniridia organisation or Aniridia Europe. Think about the skills you currently have or would like to develop that would be useful and contact them to offer your time.

Aniridia groups prepare

If you run an aniridia association or social media group, please translate and adapt these instructions and share with as many people as you can to encourage them to participate in Aniridia Day 2019.

Organise any other activities that you want as well. Tell us about your plans so we can share them here too.

Whatever you do, do it in style: order clothing and other merchandise with the Aniridia Day logo from our brand new online shop. All sales raise money for science on aniridia.

Baseball cap with Aniridia Day logo on white with black peak and sidesT-shirt with aniridia logo, white with navy sleaves and collarMessenger bag with Aniridia Day logo

Here’s a video about the day