CEO / Co-Founder & Chair of FibroFlutters | Social Media Network Co-ordinator / Director and website manager
Patient-led patient support group leader for chronic, invisible and rare illness including Fibromyalgia Action UK and also until recently Area Co-ordinator for EDS UK Sunderland, which I have needed to step down from to focus on other ongoing projects and due to health reasons. Despite that I am still going to be involved with the charity from and advocacy perspective.
Patient expert /advocate / ambassador and health, research and pharma advocate.
NIHR Patient Research Ambassador
patient-led patient support groups for people with chronic, invisible and rare illnesses at local/regional capacity - NE UK patient / health /research and pharma advocacy - FibroFlutters is also a Global online advice and support network across many social media platforms with a presence in varying communities as well across the globe. #Notjustpatients and for all stakeholders. FibroFlutters is an informal ‘patient-led’ support group based in Sunderland, North East, UK & we are there for people with Fibromyalgia, Me/CFS, Chronic illness, Chronic Pain, EDS/HMS, mental health, musculoskeletal disorders, hypermobility, & other debilitating #invisibleillness. Here in the UK it is the post-code lottery as to whether some drugs are made available to you and patient’s across our country petition all the time for issues related to it. Campaigning on a Global scale is quite a large mission, but we have done it for Fibromyalgia, MECFS, Lyme, and many more, to get the attention they need and deserve. Campaigns are a fabulous way to help educate others, whether they are patients, or carer’s, family members… even health professionals! and now even pharma!
Dermatology/Psoriasis , Dermatology/Across all conditions , Gastroenterology/Across all conditions , Genetic Disease/Across all conditions , Musculoskeletal/Across all conditions , Psychiatry/Psychology/Across all conditions , Rare Diseases and Disorders/Across all conditions , Across all conditions/Across all conditions , Musculoskeletal/Other , Rheumatology/Other , Sleep/Other