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Rare Disease Day diversity and inclusion: raising awareness by running accessible virtual events

Every year, the Rare Disease community comes together on the last day of February to raise awareness of rare diseases that affect more than 300 million people worldwide. Rare Disease Day was launched by the European Organisation for Rare Diseases (EURORDIS) and its Council of National Alliances in 2008, and since then, we have made great strides toward the development of therapies for rare diseases.

ICON is a proud member of the US National Organisation for Rare Disorders (NORD) and EURORDIS, and over the past five years, we have conducted more than 730 rare disease studies. This year, ICON’s Centre for Rare Diseases is hosting a series of activities to help raise awareness and generate change for the millions people worldwide living with a rare disease, their families and carers. These events will kick off on Rare Disease Day and include a four-day webinar series of panel discussions later in March.

This year’s Rare Disease Day theme is #ShareYourCOLOURS to highlight the diversity and uniqueness of those living with rare diseases and the rare disease community. As such, our activities are focusing on diversity, equity, inclusion and accessibility within the context of rare disease and rare disease clinical research. To amplify awareness and expand our reach to the widest possible audience, we share a few considerations for making your own virtual events more accessible and inclusive.

Developing an accessible virtual event

On 27-30 March, ICON will host a four-day webinar series exploring accessibility in rare disease clinical research. With multiple interdisciplinary panel discussions of research leaders and community advocates, we will provide insights into the value of accessibility and how sponsors, patient advocates, researchers and regulators can take action.

As the theme of this year’s Rare Disease Day is diversity within rare disease, it’s important to ensure that the activities planned are accessible and inclusive. The challenges around digital and virtual accessibility restrict the ability for those living with disability to engage with information.

Considering what potential barriers participants might face is the first step in removing them. At ICON, as we began the process of developing these accessible virtual events by researching accessibility best-practices for virtual events and assessing where we could make improvements. Beyond desktop research, it is critical to engage the diverse communities directly through discussions with accessibility advocates or other related advocacy groups. The combination of research and direct input from communities allows for a more thoughtful, tailored approach. Through this exercise, we identified the most appropriate accommodations, including the most valuable technical features that will enhance accessibility for our virtual events as well as the importance of language accessibility.

 

Defining accessibility requirements

After the research and consideration phase, we recommend creating a clear list of accessibility requirements for the event. Based on discussions with experts, panel participants and other internal and external stakeholders, we developed a prioritised list of accessibility requirements based on the parameters of the event, its goals and the communities attending. Defining these requirements helps guide event planning decisions, including selection of the host platform.

For our upcoming virtual events, we considered a wide range of accommodations including:

  • Closed captioning in English and other languages
  • Screen reader capabilities (for registration page and panels)
  • Multiple simultaneous screen viewing (to accommodate an ASL interpreter in the same frame as the speakers)
  • Transcription and translation
  • Simultaneous audio translation into other languages
  • High contrast modes or other visual modifications

While considering accessibility requirements for the virtual event, it is important to weigh the individuals’ experience against the perceived improvement of accessibility. For example, simultaneous audio translation into other languages is one way to improve accessibility for attendees that speak other languages, but it would require guests to go into breakout rooms. Dividing individuals into separate rooms may undermine the goals of collaboration and community building and would prevent them from getting to know the panellists.

 

Platform selection

When hosting a virtual event, there are numerous platforms available that offer a variety of functionalities, production support and pricing models. It may be difficult to find a platform that accommodates the list of accessibility requirements while also fitting other event planning constraints. A good starting point for this evaluation process is the American Bar Association’s (ABA) Virtual Meetings: Accessibility Checklist & Best Practices. The ABA Accessibility Features of Common Virtual Platforms list illustrates which of the common platforms includes various accessibility features. Each platform has their own built-in accessibility features and plug-in options, but they each have unique constraints as well. After selecting the best-fit platform, discuss best practices with the platform vendor to ensure the accessibility accommodations are fully implemented.

 

Translations and language accessibility

Language considerations are another key accessibility point. Virtual event platforms may provide ASL or closed captioning accommodations, but not linguistic translations. As a global organisation, we fully comprehend the necessity of providing target-language translations to facilitate accessibility and inclusion for diverse audiences. For our Rare Disease Day virtual events, ICON’s Language Services teams are providing full-service translations for live and post-event services. We are utilising a mix of live ASL translation and post-event transcript translations into multiple target languages – including Spanish, French, Hindi, Mandarin, Portuguese and German – to create accurately subtitled recordings.

Join us and #ShareYourColours

Rare Disease Day aims to raise awareness amongst the general public and key decision-makers about rare diseases and the diversity of individuals affected by them. By creating more accessible and inclusive events, we can collectively reach more people and help generate change for the millions of people worldwide that are living with a rare disease.

Learn more and register today for our interdisciplinary four-day webinar series, ‘Rare disease week 2023: Exploring accessibility in rare disease clinical research’ taking place on 27-30 March.

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