Ivy'v Story What care and support is available for those with deletion 22q11 syndrome?


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Genetics Alliance CONCORD (CoOrdiNated Care Of Rare Disease)

NEW RESEARCH: HOW CARE SHOULD BE COORDINATED FOR RARE DISEASES

Genetics AllianceGenetics Alliance are currently recruiting patients, carers and health care professionals to take part in focus groups to develop our understanding of the information that is already available about coordinated care for rare diseases. The findings of the focus groups will inform the development of a survey which will be sent to patients, carers and health care professionals later in the study.
https://www.geneticalliance.org.uk/news-event/new-research-how-care-should-be-coordinated-for-rare-diseases/?mc_cid=6fdf220cf8&mc_eid=5a165415c1 Right Arrow