In all honesty I am amazed that I have done all this especially considering my health was quite bad last year. I do tend to distract myself as much as possible, but crikey, I got around quite a bit didn’t I. – closing thoughts… Read More Reflecting back! My year of patient, health, research and pharma advocacy 2019 | Carole Scrafton
The burning question now 14 months on from that is how are FibroFlutters representing and engaging with ‘all-stakeholders’ themselves. After all it really would be rude of us to demand the industry to respect such a notion and for us not to return the favour and do it ourselves. … Read More Fibroflutters #SocialMedia #healthadvocacy and #allstakeholder approach to #healthcare, across the globe – Peeking at the statistics!
HealtheVoices Conference provides online #healthadvocates the empowerment to throw their patient voices, share ideas and also gives them the opportunity network, connect and meet other fabulous Advocates/Peers at the same time.… Read More Keep up to date with: #healthevoicesVE #healthevoices18 | HealtheVoices Conference in Chicago USA
New Patient platform! Be a Supportive Voice for Future Patients | WEGO HEALTH | 19 March 2018 Quote from Stage 5 Melanoma survivor Dan Engel – Author at WEGO HEALTH “I believe that there are thousands and thousands of survivors like myself who provide informal advocacy on an ad-hoc basis all the time, and would love… Read More New Patient platform! patient-patient registry
New! Participate in the 2018 #MillionsMissing with #MEACTION | 7 March 2018 Participate in the 2018 #MillionsMissing with #MEACTION A map of #MillionsMissing registered events will appear over the next week for you to join and RSVP! Keep checking millionsmissing.org for updates. Latest! #MEACTION Daily Digest: Urgent Congressional Action! Ask your Rep. to Sign Letter for… Read More #MEACTION news
Volunteer Opportunities (2018) Volunteer Job Opportunities Photography Videography and Video Editing Graphic Design Editing Campaigns Online Moderator Patient Advocate Grants/Trusts Events EDS Conference Volunteer Jobs Artistic Talents Writing If you think you can offer support as a volunteer please click the link for more information and if you decide it is something you would… Read More Volunteer with The Ehlers-Danlos Society | Volunteer Opportunities (2018)
Do you have Fibromyalgia, Chronic Pain, Chronic Fatigue, Fog, Depression and/or Anxiety or any other Illness where you flare from time to time and one illness rubs onto another one making you feel worse? Do you know the difference between a flare and a setback? Many people don’t and often treat themselves for a flare… Read More Fibromyalgia / CFS / Anxiety & Depression / Invisible Illness: The viscious circle of ‘Catch 22’ & Setbacks versus Flares: Which is which?
FibroFlutters is celebrating reaching a milestone and we Thank you, our followers all across social media for helping to make it happen. It’s that time of year when I start to reflect back across the years activity on social media, yes! I’m talking about which topics are liked or not, how many people are using… Read More HUGE Thank you | MILESTONE |FibroFlutters-Online now has a combined social media following of approximately 2000