If there is anything that I have learnt over the course of my journey into external advocacy, being a research ambassador, patient expert and an advocate wearing many hats for health, patients research and pharma, it is that the way that clinical trials are being conducted is changing. This is an interesting interview with Dr Weinreb a leading genetics and lysosomal storage disease researcher located in Coral Springs, Florida. Interview with CheckRare
In this video Dr. Weinreb discusses the fact that as we learn more about diseases and illnesses, and their subtypes, that it is “becoming common for clinical trials to be more focused on small subsets of a disease to better target the therapy.”
“#Physicians of all types need to be involved with this because the #biotechnology is advancing so rapidly right now,” Neal Weinreb, MD, a leading #genetics + #lysosomal #storagedisease #researcher @CheckRare #clinicaltrial #researchTweet
Learn about CheckRare, who they are and what they do via this button link below
FibroFlutters supporting Rare disease Research
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!!
About Us – Mission – Our main AIMS / GOALS
To help develop, nurture and help to create a multidisciplinary approach to all aspects of medical healthcare so that #chronicillness patients can receive the type of care and treatments that they need.
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.