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RareChat | Raising awareness with the general public

17th February, 2021 at 2:00 pm - 3:30 pm

Infographic for RareChat | Raising awareness with the general public

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Rare is Many. Rare is Strong. Rare is Proud!

With Rare Disease Day just 18 days away, we wanted our February RareChat to focus on raising awareness amongst the general public – after all, that’s what Rare Disease Day is all about!

As anyone who is familiar with rare diseases knows, rare diseases are not rare at all – in fact, they are remarkably common! Although our community knows this, how are rare diseases perceived by the general public? How aware is wider society of their existence and the substantial impact they have on millions of lives?

Naturally, many patient organisations focus their efforts on gaining the attention of clinicians and industry experts who can help them advance their specific rare condition’s research and treatment. What may be forgotten is that there is also value in raising awareness amongst the general public, as a more informed society is better positioned to empathise with and advocate for the needs of others.

Join us on Wednesday, 17th February from 2pm to 3:30pm to discuss:

  • The general public’s perception of rare diseases
  • If the general public is aware of how common rare diseases are not only in the UK, but also across the globe
  • How to get the general public to care about rare
  • The challenges you’ve faced when trying to engage the general public, as well as any successes you’ve experienced along the way
  • Is having one day dedicated to rare disease enough to help raise awareness amongst the general public?

These aren’t rhetorical questions! Sign up to have your say at our next RareChat on 17th February and come ready to share your thoughts, insights, challenges and successes with your fellow rare disease patient group leaders.

Spaces are limited, so register now before seats sell out!



17th February, 2021
2:00 pm - 3:30 pm
Event Category:


Online at Zoom


Philippa Norman