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Carole Scrafton

Carole Scrafton
  • Overview
  • Organization 1
  • Initiatives 3
  • Events 5
  • Resources 2
  • Commitments 0

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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

Organizations

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FibroFlutters , Carole Scrafton

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!

Badges

Social media

Linkedin Twitter

Conditions

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

Initiatives (3)

  How-to guide for patient engagement in the early discovery and preclinical phases

National Kidney Foundation, Ottawa Hospital Institute of Research ,
+ 17

Global

Completed less than one year ago

  How-To Guide On Patient Engagement in the Development of a Clinical Outcome Assessments (COA) Strategy

Evidera, Boehringer Ingelheim, PFMD ,
+ 14

Global

Currently underway

  Patient Engagement training and resources repository

European Centre for Clinical Research Training (ECCRT), EUPATI ,
EI
+ 14

Global

Completed less than one year ago

see all

Events (5)

15

Oct08:00 AM

16

Oct03:00 PM

Patient Summit Europe

IB
+ 9
London, United Kingdom

09

Jul05:00 PM

09

Jul06:00 PM

mdWebinar:How Can We Improve the Patient Experience in Clinical Trials?

NR

15

Sep09:00 AM

16

Sep04:00 PM

Pharma & Patient Europe 2020

IB
+ 3

25

Jan09:30 AM

26

Jan04:00 PM

Patients as Partners Europe – Connecting Globally for Patients in Clinical Research

+ 5
Online

26

Jan01:00 PM

26

Jan02:00 PM

Patients as Partners Europe – Session on Newly Reported PFMD Guidelines on Incorporating the Patient Voice in the Pre-Clinical Phase

OB
+ 2
Online

Resources (2)

+ 6

WORKSHOP 1 How to engage patients in early development and preclinical phases of medicines development

23 Sep 2019

OB
+ 5

PEOF 2020-How to engage patients in the early stages-WG1-Slides and Recording

03 Jul 2020 Other

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