Aniridia Network online Conference and AGM 2020

Sunday, 21 June 2020, 2:00 PM - 4:00 PM [BDT]

Register Now

1. Select Seats

2. Review and Proceed

Days
Hours
Minutes
Seconds

REGISTRATION

Sale ended

Attendee PARTIAL APPROVAL

Enter your discount code

  • Fee
  • Total amount

Sunday, 21 June 2020, 2:00 PM - 4:00 PM [BDT]

Settle in for a great afternoon of free, informative, online presentations and discussions about aniridia.

Join us to celebrate annual international Aniridia Day and virtually to support each other.

We have fantastic speakers plus time to ask questions and chat with people who are also affected by aniridia. 

Anyone around the world is welcome to join in on Zoom, especially patients and their relative in the UK and Ireland.
for 2 hours from:

  • 14:00 British Summer Time - BST
  • 13:00 GMT/UTC
  • 15:00 Central European Summer Time - CEST
  • 10:00 Eastern Daylight Saving Time - EDST    

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 Pediatrics in the Central Clinical Hospital of the Russian Academy of Science. 
  • Open conversation for all attendees
  • Perhaps other sessions, to be confirmed.

You can only take part if you register in advance, using the form above. 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: @AniridiaDay #ANUKconf.

Aniridia Day

We are hosting this event to mark Aniridia Day - an annual chance to bring together the worldwide aniridia community in solidarity:

  • people who have aniridia
  • their relatives
  • doctors
  • educators
  • researchers into the condition.

Together we can improve understanding of aniridia, find ways to manage its effects and find (funding for) treatments.

European Aniridia Conference

The event is also a substitute for the European Aniridia Conference which we hoped to hold in London this summer. It has been delayed until June/July/August 2021. More details to be announced soon.

 Aniridia Day logoAniridia Day logoEAC logo

Aniridia Network

Aniridia Network is a support group and charity in the UKK for people affected by aniridia: those who have it plus their family, carers, doctors, educators and other support givers.

Contact the Organizer View other events

Dr Colin Parsloe
Ophthalmologist , Milton Keynes University Hospital

I see a lot of dry eye disease and have developed a simple pragmatic approach to diagnosis and management of this condition. I assist medical technology and pharmaceutical companies in developing as well as assessing dry eye therapeutics. I have published various related patents and developed intellectual property. I also have personal experience as a patient and as somebody suffering from dry eye disease myself. I’m aware of the impact this has on my patient’s quality of life. This is one of the driving forces behind me trying to improve the awareness and education of simple diagnostic and treatment approaches in busy clinics.

https://mydryeye.com/

About Dr Colin Parsloe

Ophthalmologist , Milton Keynes University Hospital
Charles Bloch
Customer Relationship & Data Supervisor at Belgrade Theatre

26-year-old, who is registered blind and has only approximately 10% vision remaining due to aniridia, nystagmus, cataracts and glaucoma.

About Charles Bloch

Customer Relationship & Data Supervisor at Belgrade Theatre
Katie, Dave, James and Eleanor
Aniridia Network Trustee Board

We are volunteers elected by the members of Aniridia Network each year at its annual general meeting. Together we form the Trustee Board which is responsible for running Aniridia Network, making decisions about what the charity does in line with its governing document.

https://aniridia.org.uk/trustees/

About Katie, Dave, James and Eleanor

Aniridia Network Trustee Board
Sinead Kane
Lawyer, freelance researcher, keynote speaker

Sinead has 2 PhD doctorates, 2 Guinness World Record holder, and completed 7 marathons on 7 continents in 7 days. She doesn’t let her disability hold her back and is living life to the full.

https://sineadkane.ie/

About Sinead Kane

Lawyer, freelance researcher, keynote speaker
Dr. Natella Sukhanova
Head of Aniridia Center in Russia

Research associate in Department of Orphan Diseases and Disability Prevention of Research Institute of Pediatrics and Children's Health, Central Clinical Hospital, Russian Academy of Science. Member of the Union of Pediatricians of Russia.

About Dr. Natella Sukhanova

Head of Aniridia Center in Russia