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RareChat | Raising the profile of your condition

28th October at 10:00 am - 11:30 am

During our next RareChat on Thursday the 28th of October at 10 am we will be discussing the experience patient group representatives have had with raising the profile of their rare condition.

Getting lost in the noise is a constant worry for any organisation regardless of sector or size. Having your message heard above it takes hard work and a little creativity.

Patient groups by nature have a strong call to action and a deeply emotional pull. Telling your story in a clear, concise way makes people want to get involved in your mission and support your cause. A compelling story is key to standing out from the crowd and raising the profile of your rare condition.

Strategic marketing is how you can increase your organisation’s engagement and potential partnerships all with minimal effort when done tactically.

We want to hear your experiences of promoting your charity and rare condition online and in the media!

Join us to discuss:

  • How/if you’ve engaged with local news or radio to raise the profile of your condition
  • Your experience of using social media to build relationships and raise awareness for your rare condition
  • How/if you have used collaboration to raise the profile of your condition, e.g. if you have partnered with an international patient group or hosted any joint events or marketing campaigns
  • If you use your website to raise your condition’s profile e.g. through featuring testimonials from patients/families or including statistics that visually show the problem you are solving
  • Any success or challenges you may have faced using awareness days


28th October
10:00 am - 11:30 am
Event Category:


Hannah Harvey