Newsletter: October 2020

 

 

View this Newsletter in your browser: https://mailchi.mp/be98cdd05a6f/retina-international-october-newsletter

 

Hello Everyone,

October is World Blindness Awareness Month, and we at Retina International are delighted to bring you a Newsletter with many exciting updates and news.

  • Updated Mailing Lists – Action Required!
  • World Retina Day: Know Your Code Launch
  • World Sight Day 2020: US & Canada Cost of Illness Study Launch
  • Upcoming Webinar: US & Canada Cost-of-Illness study – A Panel Discussion (October 22nd)
  • Retina International announces new Leadership & Board of Directors
  • Retina International Special Recognition Awards 2020
  • In case you missed it: COVID-19 Webinar 1: A Unified Voice for the Ageing Community.
  • Updates from our Members

Updated Mailing Lists – Action Required!

We are in the process of streamlining our communications! We want to make sure we have your most up-to-date information, and are contacting the right people in your organization for the appropriate items.

Everyone who fills out this survey will be added to our new mailing list and will continue to receive newsletters and general updates from us via MailChimp.

Additionally, you will have the option to subscribe to targeted mailing lists that may be relevant to you according to your role. These are; Communications & Outreach, Science & Research, and Advocacy & Policy, and Youth.

There is also the opportunity in this survey to list any professional social media pages on which we can connect with you or your organization. We look forward to including you in our social media network!

Please complete the survey here: https://www.surveymonkey.com/r/5WSLK6F

You are welcome to share this survey with colleagues that may not currently be on our mailing list.

World Retina Day: Know Your Code Launch

Flyer: World Retina Day 2020, Know Your Code launch

On September 26th, the Retina community celebrated World Retina Day 2020. Retina International were delighted to launch the “Know Your Code” portal. Know Your Code is a genetic testing advocacy initiative, and is part of a call to action for the Inherited Retinal Degeneration (IRD) community to advocate for affordable and accessible genetic testing to accurately diagnose IRDs.

Visit the portal at: www.retina-kyc.org

World Sight Day 2020: US & Canada Cost of Illness Study Launch

Flyer: World Sight Day. Cost of Illness Study launch

On October 8th, Retina International and its partners launched the much anticipated Cost-of-Illness studies for the United States and Canada as part of World Sight Day 2020.

Some key data from these studies include:

  • IRDs in the USA and Canada resulted in a socio-economic burden of up to US $31.7 billion and CAN $1.6 billion respectively in 2019.
  • Two thirds of these costs were associated with wellbeing costs; up to US $20 billion (63%) in the US, and CAN$1 billion (66%) in Canada.
  • Productivity costs (cost relating to employment) were the second highest burden in both the USA and Canada, amounting to US $4.056 billion (14%), and CAN $205.1 million (13%), respectively.

Understanding the real impact of these conditions allows our community to advocate not only for better services but increased investment in research, and improved access to potential therapies.

These studies can be accessed on our Know Your Code portal, at the following link: https://retina-kyc.org/research/cost-of-illness/cost-of-illness-uscan/

Upcoming Webinar: US & Canada Cost-of-Illness study – A Panel Discussion

Flyer: Cost of Illness Panel Discussion October 22nd

Join us for a webinar on the US & Canada Cost-of-Illness study, which will take place on October 22nd at 12:00 EST, 18:00 CET.  During this webinar, a panel of experts from the US and Canada will discuss the key findings and impacts of this groundbreaking study. The session will last approximately 1.5 hours, and will consist of short presentations followed by a panel discussion and Q&A Session.

The full panel will be:

Moderator:
Dr. Orla Galvin – Retina International

Panelists:
Mr. Doug Earle – Fighting Blindness Canada
Dr. Todd Durham – Foundation Fighting Blindness
Ms. Allison Galloway – Patient Representative
Dr. Rob Koenekoop – Clinical/Research Representative

Please register via Zoom at the following link: https://zoom.us/webinar/register/WN_d-J5WdjqSquffquDNgtqbA

We look forward to welcoming you!

Retina International announces new Leadership & Board of Directors

Retina International held its 22nd General assembly on September 5th and 6th 2020. Due to COVID-19 travel restrictions it was, for the first time, held as a virtual meeting. There were many important outputs from this GA, amongst which was the welcoming of a new Board of Directors. They are:

D’Souza Jeremy (Retina Australia)
Holahan Ronan (Foundation Fighting Blindness Ireland)
Menzo Jason (Foundation Fighting Blindness USA)
Medefindt Claudette (Retina South Africa)
Morita Saburo (Japanese RP society)
Ramshage Caisa (Swenska RP-Föreningen)
Sánchez González David (FARPE)
Smedstad Martin (RP-foreningen i Norge)
Sutter Penz Marina (Retina New Zealand)

We wish them every success in their roles!

We also extend a warm welcome to Franz Badura (Germany) as the new Chairperson of Retina International.

Last, but certainly not least, we wish to extend our sincere thanks to our outgoing President Ms.Christina Fasser, for all her great leadership over the decades and her contributions to the Retina community. We look forward to her continued involvement in an advisory role and working together to achieve our goals.

See the official statement on our website here: https://www.retina-international.org/retina-international-change-in-leadership/

Retina International Special Recognition Awards 2020

This year, the Retina International General Assembly chose to honour 5 individuals with the Retina International Special Recognition Award for their long standing service to the Retina community. They are:

Frans Cremers (Netherlands), for his lifelong commitment to finding the genetic causes of IRDs with a view to discovering a cure or treatment.

Frank Brunsmann (Germany) for his commitment to promoting research in order to find a cure for Choroideremia, and to influence patient-driven research.

Michael Langsfeld (ProRetina Germany) and Abdullah Yusef (Retina Pakistan), were recognised along with KP Tsang (Retina Hong Kong) for their contribution to the management committee over many years.

On behalf of the community, we would like to take this opportunity to sincerely thank and congratulate you all for your impactful service.

In case you missed it: COVID-19 Webinar 1: A Unified Voice for the Ageing Community.

Flyer: A unified voice for the ageing community
On September 3rd, 17:00 CET, Retina International hosted a multi-disciplinary panel exploring the impact of COVID-19 on the ageing patient community with low vision.

Joining us on the panel was Dr. Keith Gordon (Canada) of the Canadian Council of the Blind, Dr. Heather Snyder (USA) from the Alzheimer’s Association, Karen Denton (South Africa) from Retina South Africa, and Donna Walsh (Ireland) from the European Federation of Neurological Associations.

The full webinar (58 minutes) can be viewed here:
https://www.retina-international.org/covid-19-webinar-1-a-unified-voice-for-the-ageing-community/

Members Updates:

Please see below some updates that were shared with us from our members. If you would like to feature news from your organisation in our next newsletter, please email Fiona Waters, our Community Engagement and Outreach Officer, at fiona.waters@retina-international.org.

South Africa:

Please see Retina South Africa’s E-News here: http://www.retinasa.org.za/news-retinasa/e-news/

Ireland:

Fighting Blindness Ireland are hosting their Retina 2020 conference online on November 6th 2020. Retina 2020 brings together top international and Irish researchers and clinicians to showcase the latest updates on therapeutic interventions, eye care practices and scientific discovery. Register for your free ticket: www.retina.ie

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