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Growing your patient community by identifying patients and groups online

When it comes to a patient group’s community, “the more, the merrier” couldn’t be more true. Bigger patient communities allow patient groups to increase the level of engagement in their activities, therefore maximising the impact of the support they are offering. It can also make a rare disease more attractive to researchers on financial and practical grounds.

In this 40 minute webinar, Beacon’s then Patient Group Development Manager, Libbie Read, explored opportunities for signposting to your organisation online.

What will you learn in this webinar?

  • How to use rare disease databases
  • How to use online forums and membership lists
  • How to strategically search for more opportunities which are specific to your rare disease
  • The situations when it might be appropriate to reach out to individual patients and families, bearing in mind data protection and marketing regulations and ethics

Resource type



40 minutes

Last updated

July 2019