Rare Diseases Ireland are looking for examples of the impact of COVID on the care of children living with rare conditions. See message below:
Have you or someone you know sought care or been involved in delivery of care for a child since March? Would you like to share your story?
Things to consider:Out-patient periodic reviews postponed and/or cancelled?
Diagnosis/treatment/ respite/community care postponed and/or cancelled?
Care provided through alternative methods, e.g. on-line/phone, in the community instead of hospital, etc?
Supply of drugs impacted?
Access to research and clinical trials?
If you were cocooning what impact did that have on life?
What supports have you availed of to help you to manage since the beginning of March?
What other supports would you like to access?
How has the return to education been?
Anonymised stories may be shared with policy makers to emphasise the impact of the pandemic on the lives of children living with rare conditions.
If you are interested, please contact advocacy@rdi.ie by Tuesday 3rd Nov for more details.