survey on quality care for rare disease

[messier]

Hi all I have just completed this survey that aims to define what high-quality, sustainable care, treatment, and management should look like for rare diseases. rarediseaseqs.org/

Do fill it in and add your views if you are in the UK.

[Bergenser]

Thanks for signposting this, I've filled in the survey and volunteered for the working group/focus group. I hope the work leads to decisions and standards that help families feel more supported when faced with rare diseases.

🌻🤗