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Working remotely may be a new reality for some but the norm for others in the rare disease space. Regardless it is important to prepare your teams and establish foundations to allow home-based working to proceed as efficiently as possible. Some ways to ensure this are covered below.

Being well equipped 

Make sure team members are well equipped to complete their tasks. This includes ensuring they have access to the right equipment, software and materials. Ideally, all home-based workers should be provided with organisational laptops or computers. However, with many rare disease organisations running off personal funds and limited resources, this is not always possible. If team members will be using personal devices, it is crucial to ensure they have adequate virus protection, and you may wish to look into purchasing external hard drives for work storage. You will also want to set up virtual access to files, such as through Dropbox or OneDrive, to ensure everyone has access to what they need and can share with others easily. Many popular software providers provide discounts to charities, either through their own websites or places like Charity Digital Exchange.

Good communication

Good communication channels are key in the rare disease community, where individuals often find themselves isolated due to the rarity of their condition. In work environments, it can be useful to set up official communication channels on applications such as SkypeSlack or Microsoft teams to keep all team members involved in relevant conversations. It is important to take notice of different individuals preferred methods of communication as some may prefer to catch up over message or email whilst others prefer a quick phone call. It is also key to try and maintain a normal working routine by scheduling regular virtual one to one or team meetings to keep everyone in the loop and remain sociable within the team.

Setting clear deadlines and expectations

Clear deadlines are important to make sure the team is aware of what tasks take precedence in times of disruption and challenging circumstances. Regular communication is helpful to provide clarity on what daily tasks different people should be doing. Applications such as and Asana are helpful for assigning tasks and keeping up to date with to do lists.

Setting clear expectations is important to give clarity on what the team’s goals are. Roles and responsibilities may change as patient groups develop and grow, so it is important that those involved are aware of this so they can progress with any new tasks with clarity and confidence.

Motivating the team

Continued motivation is crucial in these challenging circumstances. Everyone is motivated by different things, so it is useful to understand what drives individual team members and keep them possible. If you suddenly find yourself working from home unexpectedly, it may be helpful to carry on office-based activities remotely, such as having a chat over a coffee, sharing your lunch break over informal Zoom or Skype call, or, as Findacure do, keeping up the weekly drawing competition. Make sure to check in with the team regularly about personal matters as well as professional, as colleagues can offer a great support system at difficult times, helping to develop your team building skills even when working remotely.

Being flexible

Be flexible. Many of those in the rare disease space have healthcare challenges, commitments or caring responsibilities which can make the standard 9-5 workday difficult to navigate. For others, it can simply be more motivating to have flexibility with working hours, so it may be useful to have conversations regarding productivity when working from home. Individual’s working hours can then be adapted around when they are most productive or other responsibilities.