ARDEnt Report – Rare Disease and the impact of the COVID19 pandemic.


Making the Unseen Seen


Action for Rare Disease Empowerment (ARDent)

Did you miss Making the Unseen Seen ARDEnt Report? – CRDN EVENT

Rare Disease and the impact of the COVID19 pandemic.

Event by Cambridge Rare Disease Network (CRDN) and Niemann-Pick UK (NPUK)

Last week


“CRDN collaborated with Medics 4 Rare Diseases and Rare Revolution Magazine to bring together a cross sector group of experts and advocates newly named ARDEnt (Action for Rare Disease Empowerment) to produce a report called “Future Proofing Rare Disease Care, Research, and Treatment.” 

If you did miss it > MAKING THE UNSEEN SEEN: Rare Disease and the impact of the COVID19 pandemic.

You can access the recording of Making the Unseen Seen ARDEnt Report below

  • Please find the webinar recording here
  • The presentation slides from the webinar here 
  • The full ‘Making the Unseen Seen’ report for download here

If you are interested in getting involved in ARDEnt’s next steps, where we’ll form groups to explore each of the 9 recommendations in more depth, please email jess@metabolicsupport.co.uk to be added to a list of those interested. The theme recommendations can be found in the report and in the webinar slide deck  – slides 20, 24 and 30. We hope to re-group for follow up meetings in early June so come and share you expertise and support.


ARDEnt Group

Organiser of Making the Unseen Seen ARDEnt Report

Action for Rare Disease Empowerment (ARDent)

#impactofcovid19 #rarediseases #empowerment #healthcare #report #raredisease #rare2021


Visit the CRDN website where you can learn more about who they are and what they do. Also, you can sign up for e-news too!

Visit the Medics4RareDiseases website where you can learn more about who they are and what they do. Also, you can sign up for e-news too!

Visit the Rare Revolution Magazine website where you can learn more about who they are and what they do. Also, you can sign up for their magazine and e-news too!

FibroFlutters support Cambridge Rare Disease Network (CRDN), Medics4RareDiseases, and Rare Revolution Magazine.



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