Improving Care – Perspectives and Recommendations from the Rare Disease Community

By Leanne Talbot

Posted 6 years ago

16/03/2021 1pm
 ‘Learning from the Pandemic to Improve Care for Vulnerable Communities: The Perspectives and Recommendations from the Rare Disease Community’.
 
This editorial touches upon the situation of people living with a rare disease during the pandemic, our recommendations for holistic integrated care, and our community’s perspectives on virtual care. We have used the figures and testimonials from our Rare Barometer surveys as well as the recommendations of our Holistic Care position paper. 
 
You can read the full article here: https://www.ijic.org/articles/10.5334/ijic.5812/
 
 

Catch up on the latest news, stories and updates

Ongoing variability in the supply of pancreatic enzyme replacement therapy (PERT) — particularly Creon® 25,000iu capsules — has left some people struggling to obtain their prescription. ...