One of our Founding Team Members has this rare disease:
A collection of disease information resources and questions answered by our Genetic and Rare Diseases Information Specialists for Pigmented villonodular synovitis
Please share to help raise awareness of this condition
FIBROFLUTTERS CHRONIC, INVISIBLE & RARE ILLNESS SUPPORT
Patient Advocacy Organisation & Online Community Support
Patient * Health * Research * Pharma * Advocacy
Locally we’re a Support Group for people with Fibromyalgia, Chronic Pain, EDS/Hypermobility, Mental health, Chronic fatigue/Me, Rare & others offering friendship, support & advice in Sunderland, NE UK …
… but we also offer online support, advice and advocacy via our social media network , chronic illness portal, across the globe.
Advocating for a Multi-Disciplinary approach to all aspects of medical healthcare. With a model approach using all the ‘stakeholders’ I’m using a patient’s perspective of what patient-centred care, patient-included, patient-involved, patient-centric should look like and involve, that’s everyone by the way!
You all need to pitch in and be socially responsible for each other!!
and if you have a problem we are always open to discussion, just e-mail Carole
PLEASE NOTE: We are not medical professionals, but as patients we are sharing news, articles, information and resources out to you as all stakeholders to help keep you up to date within the Medical healthcare industries and chronic illness health, rare disease and our advocacy work for patients, health, research and pharma, including digital and AI in medicine.
PLEASE NOTE: THAT THIS SITE USES GOOGLE ANALYTICS TO COLLECT DEMOGRAPHIC INFORMATION FOR INFORMATION AND CONTENT DECISION MAKING PURPOSES ONLY AND NOT TO SELL TO 3RD PARTIES.
MANY THANKS in advance for your understanding –
from the administrator – fibrofly73 aka Carole