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

“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.” 


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


#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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