Webinar | Creating a presence: increasing visibility of your patient group

Increasing the visibility of your patient organisation

Wednesday 16th March 11 am - 12:30 pm

Patient groups play an invaluable role in the rare disease field by supporting patients and families, collecting data and pushing for policy, research and treatments. However, groups are only as strong as their community. To deliver these vital services rare disease stakeholders need to know the group exists.

This is why increasing the visibility of your patient organisation is so important. Being visible means groups can provide newly diagnosed patients, many of whom have gone through a long and isolating journey, with crucial support. Being connected with more patients also allows groups to collect more data which is key in understanding their specific disorder.

As well as patients, it is important for groups to be visible to healthcare professionals who will diagnose the disorder and could refer new patients to the group.

For many patient groups working with limited resources, knowing how to improve awareness of your organisation may not be obvious. We have designed this webinar to give patient group leaders practical tools and tricks they can use to increase their visibility both in the online and in-person setting.

Sign up for this webinar to explore:

• The different methods you could implement to increase the visibility of your organisation both online and in-person
• How to use your website, SEO and social media to get your name and mission out there
• How to target specific audiences you want to engage with

Who is speaking:

• Sue Keogh from expert digital marketing agency Sookio will discuss how groups can boost their online profile

• Jo Balfour Managing Director of Cambridge Rare Disease Network will cover how patient groups can increase their visibility by utilising the rare disease community and events

For any questions, please contact projects@rarebeacon.org