To mark this year’s Rare Disease Day, we delved into how the Solaris Health team feel about working in this space, with questions around:

• The difference working in Rare Disease compared to more common conditions

• The most rewarding aspects of working on Rare Diseases

• Memorable moments working in Rare Disease

Here are some of the highlights:

These aren’t saying that more common diseases are all simple.  It’s more that working in highly variable conditions that most HCPs won’t quickly recognise, we face a daily strategic challenge of how to improve diagnosis and, in particular, timely referral.

There’s no simple solution to this, other than to keep thinking about new approaches.  We’re employing new technologies to open new avenues to explore, but it all comes down to finding moments of strategic insight, and then crafting that idea in a campaign.

The connection that the team feels to patients with rare disease comes through clearly.

We’ve had the chance to meet and work with rare disease advocates and patients across many conditions.  They have usually been through a complex journey to get a diagnosis, to get treated and to gain acceptance of what their condition means. Their positivity under duress means we can’t help but root for them and be emotionally invested in doing our absolute best to deliver work that supports them.

The memorable moments, perhaps not surprisingly, were mostly about our engagement with patients and the clinicians who treat them.

On this Rare Disease Day, take the opportunity to think about the courage that patients with these conditions need every day. If you have communication challenges in the Rare Disease space, we’d love to help you so please do get in touch.

https://www.rarediseaseday.org/

 

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