#chronicillnessVOICE | 11 October 2018 ~ a health newsletter for everyone! #chronicillness #notjustpatients

A selection of online health related newspapers/magazines/newsletters/blogs/events


THANKYOU FOR YOUR PATIENCE AS WE WORK ON IMPROVING THE WEBSITE

It is taking longer than anticipated due to ill health & moving house!




Including!

In the Chillout Lounge!

“Increase Positive Energy Vibration” Deep Meditation Music, Clear Negative Energy, Healing Music 

By  Meditation and Healing |  8 September 2018

Psst!  It’s at the end!!



Before you start 

PLEASE NOTE: That myself and fellow FibroFlutters are patients leading a patient support group and a patient led social media network for our advocacy, networking and support services, we are not medical professionals.

Please can you read our ‘Disclaimer’ & ‘Privacy’ notes and if you have a problem we are always open to discussion, just e-mail Carole   fibroflutters@gmail.com 




FibroFlutters supporting eyeforpharma as #PatientAdvocates  #PatientVoice

Look out for our report following our jaunt to the eyeforpharma Patient Summit next week 16-17th October to read all about the conferences and our experiences:

Patient Summit Europe  incl. ‘Im-patient’ | use the hashtags ~  #impatientconf & #efppatient 

8th AnnualMarketing and Customer Innovation Europe


Wow!

It is all getting nerve-wracking and exciting all at the same time now as I prepare everything I need to take to London next week.  Even the packing of the suitcase is making me smile, however that could be because I haven’t actually left the NE UK, since going to Barcleona in March!

LOL, no really!  I am not that lucky to get away very often because health, or lack of pennies, have their way of causing cancellations and re-scheduling, ask my friends… 

Anyhoo!  this is one trip that I shan’t be cancelling due to it’s importance in our World of ‘patient’, ‘health’ & ‘research’ advocacy in connection to pharma, and the medical healthcare industries. 

Getting your valuable messages out to them is necessary, the things we have all discussed within our #chronicillness communities regarding patient support progarams (PSP’s) and patient-engagement programs within pharma and how they can help to incorporate us as patients into their supply chains in manners that benefit them, but also us as patients.  Okay, it may seem a bit raw to say ‘supply-chains’ but in the world of business management and organisational structure that is exactly what it is!  I won’t dress it up!!

We as patient’s are aware of this which is why these Patient Summits are so valuable, to both sides.  The fact that pharma has softened a little and is beginning to make the changes so that patients are more humanised within their supply-chains proves that efforts are being made.

Our trip to London will teach us to what extent they are doing this, but also what measures companies are willing to go to in order to win our trust back so that relationship building can begin.  What type of relationship? well that will solely depend on the company. I don’t think there can be a universal decision made on that aspect of this due to the many different types of pharma / healthcare companies, it is down to the company as an individual component to assess themselves to find out which routes would suit them best.

Naturally this is only one aspect up for discussion, there are many more, equally as important as this.

Well I can tell you that my Fellow Founding Five Flutter Sonia and I are really looking forward to going, and to also meeting many fellow patient voices / advocates that we only know online, and also to meeting up with those that we met in Barcelona and I can imagine there will not be enough time for us all to tell each other what we’ve been up to because there has been a lot of work going on between us all right across the Globe.

Looking forward to telling you all about it when we get back

Wishing you all wellness ~ Carole



eyeforpharma Editorial Disclaimer
The views and opinions expressed in our content are those of the authors and do not necessarily reflect the official policy or position of eyeforpharma. Examples of analysis performed within this article are only examples. Assumptions made within the analysis are not reflective of the position of eyeforpharma.

social.eyeforpharma.com/about-us

Patients Included

eyeforpharma Patient Policy ~  social.eyeforpharma.com/patient-policy

Get the latest industry insights in your inbox:

social.eyeforpharma.com/
Follow eyeforpharma on Twitter:
www.twitter.com/eyeforpharma
Like eyeforpharma on Facebook:
www.facebook.com/eyeforpharma
Subscribe to eyeforpharma youtube channel:
www.youtube.com/user/eyeforpharma


Eyeforpharma – Mission statement:
Our mission is to make pharma more open and valued
The ultimate driver for the pharmaceutical industry’s health is meeting the needs of patients, otherwise it will cease to matter. For healthcare to be as good as it could be, the strength, skills and resources of our industry need to be fully integrated into health outcomes and we need pharma experience at the decision-making table.
We believe the industry must focus on a business model combining service with product, with patients at the center.


eyeforpharma logo

 



Sharing some ‘WEGO’


Christine Von Raesfeld's profile photo, Image may contain: Christine Von Raesfeld, smiling, outdoor

Christine Von Raesfeld  a fellow patient leader and health advocate 

Im-Patient Steering Committee at eyeforpharma

Patient Advisor at PatientsLikeMe

 

 

Christine shared an EVENT she is co-hosting with Lupus Foundation of Northern California

Facebook LIVE ~ Lupus101: Essential Oils/Aromatherapy

Does aromatherapy really work?

Join the talk with Doterra Rep, Suzy Martyn, Who will be answering all of your questions about essential oil. Hosted by Christine Von Raesfeld & Lupus Foundation of Northern California

You can access this ‘Public’ Facebook LIVE event via following this link  >>>


 

Fellow #patientleader & #healthadvocate #patientadvocate Daniel De Garza shared this awareness poster via the WEGO Health Patient Leader Connection for AIDS awareness day 13th October.

Please help by sharing and showing your support


Daniel G Garza's profile photo, Image may contain: one or more people and close-up

You can find Daniel on  >>>

FACEBOOK:  www.facebook.com/DanielGenovevoGarza

Actor, Speaker, HIV Advocate, Reiki Master

Podcast Host at Put It Together – An Abnormal Entertainment Podcast

putittogetherpodcast.blogspot.com/?m=1

No automatic alt text available.

 


 

 

Guest Contributor on Pain Resource:

What It’s Really Like Living With an Invisible Illness | Pain Resource | 9 October 2018


Opening lines:

When you’re living with an invisible illness, you can look perfectly fine on the outside. The inside though is often a dramatically different story. Those of us who face this battle day in and day out live with burdensome conditions such as fibromyalgiaarthritismigrainesEhlers-Danlos syndromeautoimmune disordersSjogren’s syndromebipolar disorder and depression. The list doesn’t end there.


Pamela Jessen living with an invisible illness

 

By Pamela Jessen a fellow #advocate #patientvoice. She focuses her writing on #chronicpain #chronicfatigue & invisible illness. In addition to her writing, she #volunteers with the Patient Volunteer Network in British Columbia

Also a member of WEGOHealth Patient Leader Connection

Read the article / post via this link  >>>

Visit Pain Resource and sign-up for newsletters  >>>

 


 

I USE OPIOIDS AND I’M NOT AN ADDICT | 

Shared via the Wego Health Patient Leader Connection on |Facebook by Laura Tietz  |  Website Coordinator, Editor-in-Chief, Contributing Writer at The Unchargeables

Find Ribbonrx 

 ABOUT ~ ribbonrx

The goal of this blog is to give a voice to issues that are near and dear to my heart (meaning, issues I suffer from) that need a louder voice.


 

ribbonrx discusses their experiences with #opioids & #nonaddiction to highlight the fact that not all opioid users are addicts & it is wrong to discount it as an issue. I agree being an opioid user in the UK who isn’t up against the system in the #US


Read the blog post by ribbonrx via this link to her website  >>>

ribbonrx.com/2018/10/09/use-opioids-not-addict/


Are you a patient leader why not check out WEGO Health to see if it could benefit you, if it does why not sign-up while you are there!?

Once registered you can build your profile and also gain access to the Patient Leader Connection group on Facebook.

 

 



 

Rare Revolution Magazine |  RARE Round-up 🌍 |  11 October 2018


 

RARE Weekly TOP TIP | Keeping safe this winter –

Seasonal Flu can be a big risk to our RARE community and to those who work in health care. The World Health Organisation (WHO) advise that all health care workers and people who are most at risk of developing serious complications from influenza infection be vaccinated every year before the season begins. Conversely for some conditions having the vaccine is not recommended, and so protecting those around you may be the best protection. Your can read a wealth of information HERE, to help you and your GP make an informed choice this winter.

 


 

 

 

RARE News:
#ThrowBackThursday

Read in full HERE

 

 

 


 

rarerevolutionmagazine ~ Healthcare Unblocked 2018 healthcare conference

Healthcare Unblocked 2018 is the UK’s first flagship, must attend conference dedicated in advancing blockchain and Distributed Ledger Technology in healthcare.

Book your place HERE

Check out their other events >>>

unblockedevents.com ~ events



This will be featured in the Autumn edition of Rare Revolution later in the year.

RARE News – Manchester Medics go RARE

Last weekend, MUMPS – The Manchester University Medics’ Paediatrics Society, were delighted to present their conference entitled “A Spotlight on Rare Diseases”.

The Manchester University Medics’ Paediatrics Society are proud to be the first University Society to arrange a rare disease conference that is outside London.

The conference gave students interested in the field of peadriactrics an opportunity to see a key element of their future practises as well as rare diseases and the impact that they have on the patients and their families / carers.

Rare Revolution were proud sponsors and supporters of the event and their review of this rarity will be available in the Autumn issue of the magazine which comes out later in the year.


 

Copyright © 2018 NRG Collective –  All rights reserved.
Our mailing address is:
Westfield, Cushnie, Aberdeenshire, AB33 8LP


 

#chronicpain

Our Neglect of Chronic Pain Has Left Many Without an Identity | Scott McKinney Ph.D  |  National Pain Report | 11 October 2018 

Opening lines:

Imagine if, as a society, we had the inability to be good parents. The resulting context would be one where a greater need existed for individuals and groups that provided a solution to the problem.

Read the post via this link  >>>

Our Neglect of Chronic Pain Has Left Many Without an Identity ON National Pain Report

Visit the website >>> nationalpainreport.com/


About Us

Staff

Partners

Blog

Contact

Advertise

Privacy Policy

 



 

Welcome to the Samaritans Monthly Newsletter | Samaritans  |  5 October 2018 


World Mental Health Day | Wednesday 10 October

let’s try to remember to campaign for better mental healthcare the best ways that we can ~ Carole aka fibrofly73


Creating better listeners at work
To coincide with World Mental Health Day, we’re highlighting our Wellbeing in the City e-learning tool  >>> Sign up for Wellbeing in the City


Take part in our Christmas Raffle! | Samaritans Christmas Raffle 2018 is now open


Read all the above via this link to their newsletter, please opt-in to recieve it if you like what you read  >>>


Have a brew. Raise money. Save lives.

  • Brew Monday 2019 is coming so get ready to make it bigger and better than ever before!
  • Get together with your friends, family or workmates on Monday 21 January, have a cuppa, raise vital funds for Samaritans and beat the January blues.

You’ll be able to sign up for a free fundraising pack from October 15th – so keep an eye on Twitter for more information.
Keep up to date by following us on Twitter >>> 


Visit samaritans.org  |  Contact Samaritans  |  Volunteer with us



Whatever you’re going through, call us free any time, from any phone on 116 123.
Copyright © 2018 Samaritans, All rights reserved.

 




 

#Professionals #paients #MSK  #musculoskeletal 

Latest edition! 

ARMA Newletter | Arthritis & Musculoskeletal Alliance  | October 2018

Harnessing a collective focus to transform MSK services


In this issue

Harnessing a collective focus to transform MSK services

 

CEO update

Harnessing a collective focus to transform MSK services

“MSK – Not a challenge anyone can solve alone”

Excerpt:

“ARMA is all about collaboration, seeing the value of working together, the power of combining the perspectives of patients alongside a range of professionals. We hope that the NHS ten-year plan will also recognise both MSK, and the importance of a multidisciplinary pathway approach to supporting people with MSK conditions.” 

 


Webinar: Setting up a MSK Service

Restrictions on access to care – the impact of waiting for surgery

  • Guest blog by Justine Clarke, Chief Operating Officer, British Orthopaedic Association

MSK services survey – Please let us know what is happening locally


We need you to support ARMA during Bone and Joint Week 2018

12-20 October 2018

12-20 October is a time of important collective campaign activity for ARMA members, with Bone and Joint Week.

The theme of campaign is:

“Musculoskeletal conditions: The elephant in the room?”

During #BoneJointWeek  ARMA will be releasing a variety of infographics shariing important messages which the professionals within ARMA’s policy and Communications team have designed and created.

They ask us to share / retweet from @WeAreARMA  and to also keep our eyes peeled for vlogs from the event too

When retweeing or sharing on other social media channels can you please use the following hashtag #BoneJointWeek 

12-20 October – Bone and Joint Week:

12 October: World Arthritis Day

16 October: World Spine Day

19 October: World Paediatric Bone & Joint Day

20 October: World Osteoporosis Day

Bone and Joint Week 2018 is part of an international campaign to improve musculoskeletal health.


Webinar – Commissioning for Quality:

Community-based Rheumatology Service | 19 October 2018 – 12.30 – 1.30

  • Who should attend? Commissioners, GPs, clinicians working in rheumatology services.
  • Presenter:
    Erica Gould, Nurse Consultant at Community Rheumatology Service Modality Partnership

Webinar – The British Society for Rheumatology’s Choosing Wisely UK Recommendations
1 November 2018 12.30 – 1.30

  • Who should join?  Everyone interested in optimising care for people with musculoskeletal problems, including patients, carers, clinicians from primary and secondary care, allied health professionals and commissioners.
  • Presenters:Charlotte Sharp, Rheumatology Specialist Trainee, HEE(NW) and Clinical Academic Fellow, NIHR Collaboration for Leadership in Applied Health Research and Care Greater ManchesterLizzie MacPhie, Consultant Rheumatologist, Lancashire Care NHS Foundation Trust, and Chair of the British Society for Rheumatology’s Standards, Audit and Guidelines Working Group.

  • Public Health England – Case study and report on lessons learnt
    A report by Public Health England has been published in the World Health Organization’s European journal, Public Health Panorama.

“Developing partnerships and a whole-system approach for the prevention of musculoskeletal conditions in England”


And much more!…

MSK services survey – Please let us know what is happening locally

As part of their Clinical Networks Project, ARMA wants to find out what is happening to improve MSK services across England in order to see how we can best target their support for improvements.


Link to the newsletter where there are lots of things to read in this issue! >>>

ARMA OCTOBER Newsletter


Who are ARMA? >>> About ARMA


  • To see previous issues of the newsletter, click here
  • Follow us on Twitter:   @WeAreArma
  • To include items in the ARMA newsletter, please contact us.

Heard about the new MSK Hub ?

It’s a tool for sharing knowledge and collaboration, an online library of resources. If you know of reports, evidence, guidelines that should be posted, please let those authors and organisations know they can add content.

 



 

#professionals  #patients  #paintoolkit  #toolkit  #selfmanagement

New research from Pain Concern on easing pain appointments | Pain Concern |  October 2018

Helping focus pain appointments with the Navigator Tool

This edition has been funded by funded by the Health and Social Care Alliance and Edinburgh and Lothians Health Foundation

Adam Wilson | Broadcast Assistant | Pain Concern said in his correspondence –

“In 2015 Pain Concern released its report ‘Breaking barriers to self-management of chronic pain in primary care’, marking the end of the first part of its ‘Breaking Barriers’ project. Its aim was to highlight the commonly occurring barriers that patients faced during one-to-one appointments with healthcare professionals, and to advance the primary care management of chronic pain.

Phase two of the project was to produce a ‘navigator tool’ to break down those barriers and prepare patients and GPs in order make the most out of their appointments. Phase two is now complete, and in this edition of Airing Pain, Paul Evans speaks to the researchers, patients, and healthcare professionals that allowed this project to happen.”


More information:

The Navigator Tool is free to download from Pain Concern’s website along with the study, the report, FAQs, and a wealth of resources from experts into managing long term pain. Just visit painconcern.org.uk/easing-pain-appointments/

Contributors:

–    Dr John Hardman – GP, Navigator Tool study participant   
–    Professor Blair Smith – Scottish Government Lead Clinician for Chronic Pain, Professor of Population Heath Science, University of Dundee
–    Dr Louise Bailey – GP, Navigator Tool study participant   
–    Renee Blomkvist – Pain Concern researcher for the Navigator Tool
–    Lucy Murphy – Patient, Navigator Tool study participant


Pain Concern
Registered Office: Unit 1-3, 62-66 Newcraighall Road, Edinburgh Eh15 3HS
Company Limited by Guarantee, Registered In Scotland No: 546994
Scottish Charity No: SC 023559
Tel: 0131 669 5951
www.painconcern.org.uk

Helpline: 0300 123 0789 E-Help: help@painconcern.org.uk
Find us: Twitter  Facebook  Forum
Copyright © 2017 Pain Concern, All rights reserved.

 



Patient Newsletter  |  Is overtime wrecking your health?  |  26 September 2018

Main Headline  >>>

What overtime is really doing to your health?

Healthy living tips from the experts

Should you take vitamin D every day?

Are e-cigarettes a safe way to quit smoking?

What is sexual consent?

Who should take aspirin every day?

This week’s recipes

Sticky soy citrus baked salmon

Sausage pilaf


Join our mental health forum >>>


Read more articles / posts from the newsletter by following this link  >>>

Visit the Home Page and register for patient access as well as newsletters >>>



Patient work in partnership with the NHS
© Patient Platform Limited. Registered in England and Wales.
Registered number: 10004395 Registered office: Rawdon House, Green Lane, Yeadon, Leeds LS19 7BY. Patient is a UK registered trade mark.

Patient.info

 



#PAM2018

#disability  #disabilitynews

Disability News Service (DNS) 

A great site for health and disability news 


Disability News Service (DNS) is run by John Pring, an experienced journalistwho has been reporting on disability issues for nearly 20 years.

He launched DNS in April 2009 to address the absence of in-depth reporting in both the specialist and mainstream media on issues that affect the lives of disabled people.

Read more Disability News Service – About us

On Twitter:  @johnpringdns


Visit the website to check out their latest disability news >>>


Headlining today on Disability News Service (DNS)>>>

Readspeaker Tool enables you to listen to the articles


 

 

Looking down on an audience watching a man on a stage, with the man also on a big screen above the stage



 

Esther McVey speaking in the House of Commons

 



The International Standard Serial Number for Disability News Service is: ISSN 2398-8924

 



 

#Neuroscience #neurology #neuroscience

Neuroscience Newsletter |  10 October 2018

Enjoy our latest Neuroscience News updates from the last 24 hours. You can read the full articles by clicking on the headlines or the links embedded in the summary.



Researchers Show Change in Beliefs Associated with Dopamine in Brain
2018-10-10 
A new brain imaging study reveals how the midbrain and striatum, two key areas of the dopamine system, become more active when a person updates their beliefs about the world around them.

Altruism Can Be Trained
2018-10-10 
Researchers report altruistic motivations and behaviors can be changed with the help of mental training.

Never Forget a Face? People Know an Average of 5,000 Faces
2018-10-10 
A new study reveals that, on average, we are able to recognize 5,000 different faces.

Infants’ Brain Circuitry Linked to Future Health
2018-10-10 
Researchers reveal the growth rates of a baby’s brain circuits may help to predict the child’s IQ, emotional behavior and cognitive abilities at the age of four.

Study Firms Up Diet and Depression Link
2018-10-10 
A new study adds to growing evidence that your diet can have significant impact on your mental health. Researchers found people who consumed more fast foods had higher rates of depression than those who consumed a seafood rich diet.

How Cognitive Development Shapes Attitudes About Physical Activity
2018-10-10 
Researchers report the reason many shun away from physical activity as adults may be rooted in childhood experience. The study reveals negative memories associated with PE classes during childhood may generate negative response to participating in exercise as adults.

Muscular Men Prefer an Unequal Society
2018-10-10 
A new study reports physicality and political attitudes may be linked, for men at least. Researchers found more muscular men tend to prefer political attitudes that favor inequality, and the tendency to have positive attitudes toward inequality increased as upper body strength increased following months of physical training. The study, researchers report, challenges conventional belief that people’s political views are shaped by logic and reason alone.

How Binge Drinking and Stress Affect Males and Females Differently: Mouse Study
2018-10-10 
A new study reveals a history of binge drinking leads to more instances of drinking under stress and when anxious in males, but not in females

Neuroscience News |  Neurology  |  Robotics |  Psychology  |  Submit News
Neuroscience News
4747 Research Forest Drive, STE 180
The Woodlands Texas 77381
USA


Neuroscience is a multidisciplinary science that is concerned with the study of the structure and function of the nervous system.

 



 

#mentalhealth #pyschcentral

fibroflutters mental heal discussion group cover pic

Psych Central Newsletter |  Psych Central Daily

10 October 2018

Today’s headlines  >>>

  • Can Too Much Choice Limit Us?
  • How to Really Get Important Things Done
  • Young Refugees, Immigrants in Canada Face Barriers to Primary Care for Mental Health
  • Adults with ADHD Tend to Excel at Creative Originality

 


Read the above posts via this link  >>>


Visit the website for more posts and select to opt-in for their newsletters  >>>

psychcentral.com/



Copyright © 2018 Psych Central, All rights reserved. 
Our mailing address is: 
Psych Central
PO Box 5464
Bradford
MA 01835

CERTIFICATE OF COMPLIANCE Psych Central is in compliance with the HONcode
Logo certificat HONCode

Society for Participatory Medicine


 




 



girl reading a newspaper
Photo by Kaboompics .com on Pexels.com


UPDATED LIST

paper.li newsletters have also My favourite health related paper.lis and they update themselves.   The list includes >>>

DAILY| European Medical Journal

The Patient Registry  |  Daily News & more on patient registries and their impact on healthcare today

A WEEKLY paper | The Receptive Sound Therapy Daily

DAILY! | PHARMAGEEK NEWS, le Journal 

The Immunology  | DAILY!

TWICE DAILY!   |   News from Focus on Disability 

DAILY! | Above The Fold in Healthcare is out!

DAILY! | Brainless Blogger News

DAILY!  The Chronic pain  Support from Coach Amber Rose 

Updates every couple of days!  The brain and mental health voice is out! | selection by Valeria Duflot 

Twice Daily! |  Fibromyalgia ME Chronic Pain is out 

TWICE DAILY! | Life Chronic Pain & Autoimmune Systemic Diseases & Dementia® 

TWICE DAILY! | News from UK Care Guide 


Don’t forget! if you like what you read, share and opt-in for their e-newsletters!!

 About paper.li  |   paper.li/introduction.html




“PatientsLikeMe is the world’s largest personalized health network that helps people findnew treatment options, connect with others and take action to improve their outcomes.”

I am Proud to be a member and Ambassador of

@patientslikeme, the world’s largest personalized health network
helping 600,000+ people with 2,800+ conditions find new options for treatments, connect with others and take action to improve their outcomes.

Join for free on PatientsLikeMe.com!

A chance to change the future of personalized health.

Very soon PatientsLikeMe.com will have their own spot on the website where you will have access to the links to their community as well as their news and information.  ~ Carole

 



#PAM2018

#NeuroendocrineCancer  #NETS

RonnyAllan.NET – Community Newsletter Covering August 2018

ronnyallan.net/2018/08/31/ronnyallan-net-community-newsletter-covering-august-2018/

International Awareness of Neuroendocrine Cancer and associated issues. Supporting and helping NET Patients



 


Please note that I have opted-in to receive all the newsletters that I post from and also please remember to read the privacy policies.

Also, due to the excessive amount of newsletters landing in my inbox, and my haphazard sleep cycle, not all will get updated daily!

If you like what you read PLEASE remember to share and opt-in

 




patient header 2PAINT


Only 3 weeks to go and we’ll be packing our little cases and boarding the train to London, will you be there?

I can’t believe how time has flown past and the conference is only a few weeks away.  It is really exciting to be involved and helping to collaboratively bring about changes within the world of medical healthcare. 

Helping to close the gap between pharma and patients and increase relations, encourage collaborations and stave off the ideas that patients can be manipulated.

Thanks to eyeforpharma’s regard towards Patients, Patients Included, and giving us a platform to share our patient voices, and our input during roundtables and panel discussions at their pharma conferences we can help pharma improve the products and services they make.  Help improve patient engagement programs / or, PSP’s Patient support programs between pharma and patients in ways that improve service design, product and service quality using collaborative methods and utilising all stakeholders to produce end results.

  • Will patient-centricity win-over pharma in London, how are companies becoming patientcentric, which companies are trying to be patientcentric?

  • Is patient- engagement working for pharma, what isn’t working? It can’t all be perfect!?

  • How is the concept of ‘Patient-engagement’ progressing is it proving to be useful, or does it need to be reassessed as a tool?


Innovation is also hot-topic as new ways of producing things have developed, including the use of AR, VR, AI, 3D printing and robotics to help improve surgical procedures, general medication delivery systems and even new bones and not that long ago even skin tisue, for a few examples.

Also, the different new ways that innovation is assisting clinical research and especially biopharma, health education videos for hospitals and HCP’s, and much more from the world of digital. Will we see some of that in London within the innovation, science and technology sector of the conference?


Of course aside from the World of Medical Affairs is the Impatient Conference and the part of the journey where we really do hope to make a difference.  It really has been designed by patients and the hope is that we can help bring patients and pharma closer together at this Pharma & Patient Co-creation event. 

  • How are pharma increasing patient relations, are they rebulding our trust yet?

  • How will we as patients convince pharma to make the necessary changes required to rebuild their pharma-patient relations?

  • What does pharma believe it should do? Do we as patients agree with pharma? If not, how do we compromise so that solutions can be formed and progression can continue.  Otherwise this time next year we will still be discussing it!

It’s time for pharma to stop ‘saying’ and start ‘doing’, be more proactive and begin to move forwards.

(Opinions are my own)


#pharmanews #eyeforpharma #pharma #tech #EVENTS #ai #digital #patients

Patient Summit Europe
16-17 October 2018, London UK


Europe’s Top Pharma & Patient Co-creation platform to attend in 2018

“If you don’t partner, patient centricity will never become more than just an idea.”

  • 250+ attendees
  • 40+ speakers
  • 15+ case studies
  • 20+ roundtable discussion topics

Including  >> 

The Im-patient Conference which is new, and its bold.

No longer is eyeforpharma HQ in the driving seat, instead it is entirely designed, created and hosted by patients. We believe that in doing so, we will capture the true essence of what patients want – and put them in the driving seat.


Follow this link to see who is attending and register to join us  >>>

#efpPatient Patient Summit Europe


Come and see me take part:  17:00 – 17:40 (Day 2)  17th October >>>
Panel: Candid patient perspectives on the good, the bad and the ugly of service design


Other panelists:
  • Teresa Ferreiro | Patient Advocate
  • Trishna Bharadia | Patient Advocate | eyeforpharma Award Winner
  • Paola Antonini, MD, PhD | AISC Scientific Committee Member, Head of Clinical Research & Training Initiatives | AISC

Moderator:  Paul simms | Chairman| Eyeforpharma



  • How do patients really experience pharma’s services?

  • Can pharma better build trust with patient communities to develop productive collaborations?

  • Innovation is supposedly the ‘silver bullet’, but where do patients really see the opportunity for change?

#efpPatient Patient Summit Europe

Maybe I’ll see you there ~  Carole Sian

Patients Included

eyeforpharma Patient Policy ~  social.eyeforpharma.com/patient-policy

 



 

EVENT | eyeforpharma | Marketing and Customer Experience Europe/London 2018 Oct 16-17th

Running alongside the Patient Summit

Marketing and Customer Innovation Europe 2018

Join the most forward-thinking meeting of leading marketers in Europe and learn to:

  • Redefine HCP relationships
    Develop a deeper educational partnership with your customers and transform engagement
  • Embrace digital. Be the future
    Implement a digital-first communication strategy for effective and efficient customer interaction
  • Educate to innovate
    Eliminate fear of innovation by empowering your workforce with the capabilities needed to form lasting HCP relationships
  • Deeper insights, real value
    Analyse data for actionable insights that result in a better understanding of patient needs and position you as a trusted presence

 


image001


eyeforpharma Editorial Disclaimer
The views and opinions expressed in our content are those of the authors and do not necessarily reflect the official policy or position of eyeforpharma. Examples of analysis performed within this article are only examples. Assumptions made within the analysis are not reflective of the position of eyeforpharma.

social.eyeforpharma.com/about-us

Get the latest industry insights in your inbox:

social.eyeforpharma.com/
Follow eyeforpharma on Twitter:
www.twitter.com/eyeforpharma
Like eyeforpharma on Facebook:
www.facebook.com/eyeforpharma
Subscribe to eyeforpharma youtube channel:
www.youtube.com/user/eyeforpharma


Eyeforpharma – Mission statement:
Our mission is to make pharma more open and valued
The ultimate driver for the pharmaceutical industry’s health is meeting the needs of patients, otherwise it will cease to matter. For healthcare to be as good as it could be, the strength, skills and resources of our industry need to be fully integrated into health outcomes and we need pharma experience at the decision-making table.
We believe the industry must focus on a business model combining service with product, with patients at the center.


eyeforpharma logo



FIBROfLUTTERS LOGO ON WHITE PHOTOTASTIC

Awareness Campaigns

Got a campaign you’d like to share, drop me an e-mail, Carole at fibroflutters@gmail.com



#PAM2018

         

 FIBROfLUTTERS LOGO ON WHITE PHOTOTASTICFMAUK SUPPORT GROUP LOGO  WorkingWith-200_100[1]


FibroFlutters in Support:

#Fibromyalgia #fightfibro #Fibro2018 #fibroawareness #shoutitloud #Patients #JustGiving

Fundraising to raise £20,000 for Fibro drop-in centre  |  Rock Off Fibro ~ Fibromyalgia awareness


Quoted from Just Giving page:

“Weʼre raising £20,000 to Help fund the opening of the UKs 1st Fibromyalgia, drop in center to drive our work forward helping those with Fibro , Ptsd , Chronic pain”, Jackie Williams ~ Rock Off Fibro, Fibromyalgia Awareness

Please can you help such a worthy cause, patients are trying to help other patients?!


PLEASE help raise awareness of join us as we launch our double album. fantastic night of     

Special guest appearance by

The Rigger , Newcastle Under Lyme

please share


Visit Rock Off Fibro’s PUBLIC group on FaceBook  >>>

ROCK OFF FIBRO, Fibromyalgia Awareness concert. Public group

Visit Rock Off Fibro on Twitter  >>>

Rock off Fibro   @rock_off_fibro

twitter.com/rock_off_fibro

 



 

#EpilepsyAwareness  #Epilepsy

The Turning the World Purple Foundation  |  Epilepsy | 


MOTTO:

We are more than our diagnosis. Epilepsy is NOT who you are.

We are working to smash stigmas associated with Epilepsy through advocacy and education.

www.turningtheworldpurple.org/

Maybe you could help out in some way and get involved 🙂

 



 

chronicillnessbloggers.com
Connecting You to the Chronic Illness Community

chronicillnessbloggers.com  | 2018/02/07 | new-era-chronic-illness-bloggers

 



 #notjustpatients

fibroflutters mental health discussion group cover pic
Don’t be afraid to reach out!

Why not join FibroFlutters Mental Health Group On faceBook and help us to grow a friendly place to talk about Mental Health  >>>

https://www.facebook.com/groups/FFHQMentalHealth/



Something new

In the Chillout Lounge!

“Increase Positive Energy Vibration” Deep Meditation Music, Clear Negative Energy, Healing Music 

By  Meditation and Healing |  8 September 2018

 

Why not visit Meditation and Healing to see what other tubes they have?  >>>

 



Every morning and evening I was posting several links to a variety of online newspapers and thought that maybe I could post from here via newsletters, our website/blog,  instead.

This is to ensure that all the news and stories go out to everyone that follows us across the social media platforms that we have profiles/accounts.

There’s a few links to my favourite online newspapers for finding a variety of health related news from other Chronic Illness Bloggers & Warriors, for up to date news about health conditions such as latest research papers or people sharing hints and tips about how they cope day-to-day.

Let us help them by showing our support by sharing the news and stories that they share.

If you publish a health related paper.li or other health news magazine/paper that isn’t listed and you would like it to be, please contact me – Carole Sian at fibroflutters@gmail.com or use the form below and let me know, always happy to help 🙂




FibroFlutters continuously

Advocating for a Multi-Disciplinary approach to all aspects of medical healthcare. With a model approach using all the ‘stakeholders’ I’ve designed 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!!




Please note that I have opted-in to receive all the newsletters that I post from and also please remember to read the privacy policies.

Also, due to the excessive amount of newsletters landing in my inbox, and my haphazard sleep cycle, not all will get updated daily!

If you like what you read PLEASE remember to share and opt-in




FIBROfLUTTERS LOGO ON WHITE PHOTOTASTIC

FibroFlutters – 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 and offering online support via our social media network across the globe.

PLEASE NOTE:  We are not medical professionals nor claim to be, and remember that you should always consult your doctor about any health problems and not use Dr Google, or rely on information that you may read online through 3rd parties.

Please can you read our ‘Disclaimer’ & ‘Privacy’ notes and if you have a problem we are always open to discussion, just e-mail Carole   fibroflutters@gmail.com 


MANY THANKS in advance for your understanding –

from the administrator – fibrofly73

 


Many thanks for reading our posts and helping to share the news that other folks like you write, or, find.



Got something you’d like to suggest or even just talk about please contact us via this form

 

 

 

Advertisements