Although good examples of coordinated care exist, there are still serious failings in how care is coordinated for many with rare diseases (including undiagnosed genetic conditions). Many patients do not receive care at a specialist clinic or have access to a named care coordinator, and they have no choice but to become a ‘project manager’ of their own healthcare. Clinic appointments can be frequent and involve significant travel. The UK Rare Disease Strategy (published in 2013) said that it was essential to coordinate care for people with rare conditions and more needed to be done to improve coordination. Unfortunately, there is no strong evidence as to how this should be done for different patients and further research in this area is needed….

Read more here; https://www.geneticalliance.org.uk/news-events/news/new-research-how-care-should-be-coordinated-for-rare-diseases/

For further information please do hesitate to contact Amy Simpson at amy.simpson@geneticalliance.org.uk, or myself at linda.chic@sicklesociety.org