We have received a request from Eurordis (the European Rare Disease Organisation) to see if we could find 3–4 adults who are patients with Fabry, an MPS or related lysosomal storage disease to be part of an important Focus Group to be held in London in September.
The Web-RADR project in which Eurordis participates finishes soon (30 September 2017), with one more action for which they need our help.
Previously, a mobile app for patients and healthcare professionals (HCPs) to report adverse drug reactions (ADRs) and to receive medicinal product information – i.e. two-way risk communication – has been developed. In the UK the app is called Yellow Card.
The focus groups will look at the language used within the app and whether it is patient friendly or too technical.
If you would be interested in participating in this focus group workshop please email Barbara Cotterell no later than 10 August 2017 confirming you would like to participate and giving the MPS Society permission to pass your name and email on to Eurordis.