Written Question · S6W-29623 · Session 6
What discussions it has had with healthcare providers regarding reducing any prolonged diagnosis times for individuals with hypermobile Ehl…
The question
To ask the Scottish Government what discussions it has had with healthcare providers regarding reducing any prolonged diagnosis times for individuals with hypermobile Ehlers-Danlos syndrome (hEDS) or hypermobility spectrum disorder (HSD).
The answer
Clinical geneticists are represented on Scotland’s Rare Disease Implementation Board (RDIB) where issues around the referral and diagnosis of individuals with hEDS and HSD have been discussed. RDIB are responsible for overseeing the implementation of Scotland’s Action Plan for Rare Diseases (2022) and the priorities for the coming year set out in our recent Progress Report (August 2024). Faster diagnosis remains one of these priorities, for all rare conditions.
In the Official Report
No contribution in the Official Report cites S6W-29623 by reference.