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Growing your rare disease patient group: Identifying patients and groups online

11th July, 2019 at 10:00 am - 10:45 am

[Image description: A photograph of two people hugging at a Findacure workshop. They are hugging like they are good friends who haven’t seen each other in a while.]

Calling all rare disease patient groups! Are you hoping to grow your group’s patient community? Tune into our webinar to find out how you can identify and reach out to patients online.

There are two main ways of growing your patient group’s community online: building an online presence (e.g. through a website and social media) to make it easier for patients and families to find you; and actively identifying and reaching out to patients.

This webinar will cover the second way, and more specifically, how patient groups can identify other groups, patients and families online. The webinar will last 30 minutes and will cover:

– Searching rare disease specific platforms
– Searching mainstream media, including social media and news stories
– Regulatory and ethical considerations

There will be the opportunity to ask questions and suggest your own ideas throughout the webinar.

The webinar will be recorded and made available on our website following the live event.

Who is this webinar for?
Anyone with an interest in rare diseases is welcome to attend. The webinar will be most relevant to recently formed patient groups and those who want to pick up skills in online searching.

Why this topic?
When it comes to rare patient communities, “The more, the merrier!” couldn’t be more true. By building bigger patient communities, patient groups can improve the level of engagement in their activities, therefore maximising the impact of the support they are offering.

Reaching out to patients can also support medical research. Currently, for most rare diseases, the estimated number of people affected is not accurate and there is no central database of everyone who has been diagnosed. By reaching out to patients and building patient registries, patient groups can connect patients to researchers for participation in their research projects. You can find out more about patient registries on our e-learning portal.


11th July, 2019
10:00 am - 10:45 am
Event Category:




Libbie Read