It’s been a while since we shared with you the progress we’ve made on the Red Flags of Rare Disease Survey that we conducted towards the end of 2018.
As you can imagine, a survey of this magnitude takes quite a bit of analysis and we want to make sure we deliver the results to you in the best way possible. So early this month we announced our collaboration with Sondra Butterworth from RareQOL.
Sondra is a specialist in Community Psychology and a Graduate member of the British Psychological Society and is also a completing Doctoral Student at the University of Chester.
RareQoL is a Social Enterprise with a mission to improve Quality of Life for the Rare Disease Community and under-represented groups.
Sondra’s PhD thesis was entitled ‘A Mixed Methods Case Study into the Quality of Life and Social Support of adults living with Epidermolysis Bullosa (EB), Ehlers-Danlos syndrome (EDS) and related genetic conditions’. Sondra says she is delighted to be working with M4RD as as a Research Consultant on the M4RD Red Flags project
Dr Lucy McKay, M4RD CEO says “We haven’t forgotten about all the data that patient groups generously contributed to the Red Flags Survey in 2018 and we want to make sure we make the most of it. Our Clinical Ambassador, Dr Mariam Al-Attar, and I made a start and found some interesting conclusions. But we want a real expert to get stuck in now. I am so excited that we found Sondra to help us with this project. Looking forward to seeing results in 2021”