Tag: Advocacy

My experience – First face-to-face event in 2 years!

This week I was lucky enough to attend the ‘Patient Centricity and Collaboration Global Congress 2021, Europe, that was held in London on 8-9th November. By Paradigm Global Events, that was held in London on 8-9th November. The last time I attended such an event in person was in October 2019, in London. In this article I discuss it, my experience and share the messages that I took with me.… Read More My experience – First face-to-face event in 2 years!

fibrofly73

#COVID_19 won’t stop the #collaborating or #crossnetworking – JOIN US for FREE as eyeforpharma Philadelphia goes #Virtual

During these extraordinary times, the most important thing Pharma can do is collaborate cross-functionally and cross-company.… Read More #COVID_19 won’t stop the #collaborating or #crossnetworking – JOIN US for FREE as eyeforpharma Philadelphia goes #Virtual

fibrofly73

Reflecting back! My year of patient, health, research and pharma advocacy 2019 | Carole Scrafton

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

fibrofly731 Comment

Fibroflutters #SocialMedia #healthadvocacy and #allstakeholder approach to #healthcare, across the globe – Peeking at the statistics!

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!

fibrofly73

Keep up to date with: #healthevoicesVE  #healthevoices18 | HealtheVoices Conference in Chicago USA

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

fibrofly731 Comment

New Patient platform!  patient-patient registry

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

fibrofly73

#MEACTION news

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

fibrofly73

Volunteer with The Ehlers-Danlos Society | Volunteer Opportunities (2018)

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)

fibrofly73

Fibromyalgia / CFS / Anxiety & Depression / Invisible Illness: The viscious circle of ‘Catch 22’ & Setbacks versus Flares: Which is which?

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?

fibrofly73

HUGE Thank you | MILESTONE |FibroFlutters-Online now has a combined social media following of approximately 2000

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

fibrofly73