#ChronicIllnessVOICE Evening Edition: ~ a health newsletter for everyone! #notjustpatients #chronicillness| 18 June 2018

#men get migraine too #menshealth #migraine 
Living the Minority: Life as a Man with Migraine |  BY JASON (GUEST WRITER)  | The Migraine Mantras | 17 June 2018… Read More #ChronicIllnessVOICE Evening Edition: ~ a health newsletter for everyone! #notjustpatients #chronicillness| 18 June 2018

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#chronicillnessVOICE | Okay ‘it’s not Morning’ Edition | 16 June 2018 ~ a health newsletter for everyone! #chronicillness #notjustpatients

#Parkinsons #NewEvidence #Medicine
New evidence sheds light on how Parkinson’s disease may happen | Baylor College of Medicine |  14 June 2018, 
Opening sentence:

‘Researchers at Baylor College of Medicine and Texas Children’s Hospital have identified unexpected new key players in the development of an early onset form of Parkinson’s disease called Parkinsonism.’… Read More #chronicillnessVOICE | Okay ‘it’s not Morning’ Edition | 16 June 2018 ~ a health newsletter for everyone! #chronicillness #notjustpatients

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Brochures available! Patient Summit-London & the ‘Patient Summit’ Philadelphia events in October | eyeforpharma / Impatient

Thankyou to everyone…
…who has participated in the design of ‘Impatient’-London event in October, and the ‘Impatient’ Philadelphia event also in October.… Read More Brochures available! Patient Summit-London & the ‘Patient Summit’ Philadelphia events in October | eyeforpharma / Impatient

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(EDS UK) Ehlers Danlos UK – Fibromyalgia and CF (Chronic fatigue) by Dr Alan Hakim, MA FRCP

Do you have EDS, JHS, HMS or Fibro alongside Chronic Fatigue?   Do you know what Chronic means?, or the term General Pain This is an educational read, that explains the differences between Chronic Widespread Pain (CWP) and Chronic General pain (CGP) and Chronic Fatigue.  it also explains some correlations between CWP, CGP, fibro and fatigue &… Read More (EDS UK) Ehlers Danlos UK – Fibromyalgia and CF (Chronic fatigue) by Dr Alan Hakim, MA FRCP

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The Power Of A Support Group | John Kaniecki  | PLUS… ‘Thoughts regarding support groups’ by Carole Sian ~ FibroFlutters CEO

“Talking is very beneficial as it helps members to also learn about their conditions and also where to find specified help and resources.  Sometimes just knowing you’re not the only one can mean the World when times are so difficult.” #PatientGroupLeader       #PatientVoice #MentalHealth
Thoughts by Carole Sian ~ FibroFlutters regarding support groups >>>… Read More The Power Of A Support Group | John Kaniecki  | PLUS… ‘Thoughts regarding support groups’ by Carole Sian ~ FibroFlutters CEO

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FibroFlutters ~ CHRONIC, INVISIBLE AND RARE ILLNESS SUPPORT / ADVICE / ADVOCACY| Disclaimer | Privacy Notes | 8 May 2018

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

Please can you read our ‘Disclaimer’ & ‘Privacy’ notes and if you have a problem we are always open to discussion,… Read More FibroFlutters ~ CHRONIC, INVISIBLE AND RARE ILLNESS SUPPORT / ADVICE / ADVOCACY| Disclaimer | Privacy Notes | 8 May 2018

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Your Aromatherapy Guide  |  Jan Randall  |  14 April 2018

Your Aromatherapy Guide  |  Jan Randall  |  14 April 2018

Opening paragraph:

‘Spring is a beautiful time of the year with the longer days and the warmer weather…….it is a time of hope, anticipation and renewal. We feel brighter and more active as our yang energies are beginning to rise and there is a sense of renewed energy and an excitement to be outside. We want to shake off our sleepy winter hibernation!’

Read More Your Aromatherapy Guide  |  Jan Randall  |  14 April 2018

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The Power of Digitalizing Healthcare  | White Paper | Siemens Healthineers  |  15 Dec 2017

Free Downloadable Industry Report: The Power of Digitalizing Healthcare  | White Paper | Siemens Healthineers  |  15 Dec 2017 Exerpt: ‘Digital technology has disrupted many industries, including healthcare. Will smart data be able to support creating actionable insights that will help expand precision medicine, transform care delivery, and improve patient experience?’ http://www.healthcare.siemens.com/magazine Who are Siemens Healthineers?… Read More The Power of Digitalizing Healthcare  | White Paper | Siemens Healthineers  |  15 Dec 2017

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#WEGOHEALTH  10 Tips for Participating in a Twitter Chat  |  Julie Cerrone WEGO HEALTH  |  11 April 2018 

#WEGOHEALTH  10 Tips for Participating in a Twitter Chat  |  Julie Cerrone WEGO HEALTH  |  11 April 2018  Julie Cerrone is ‘Patient Leader Network’ Director at WEGO Health Twitter chat is fast becoming a great way to communicate with each other about specific themes within our health / chronic illness areas.  It is also a fab… Read More #WEGOHEALTH  10 Tips for Participating in a Twitter Chat  |  Julie Cerrone WEGO HEALTH  |  11 April 2018 

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Empowered #patientchat – Are We Missing the Mark with Patient Involvement?

Empowered #patientchat – Are We Missing the Mark with Patient Involvement? Empowered #patientchat – Are We Missing the Mark with Patient Involvement? Opening paragraphs: ‘You’re Invited! We hope you’ll join us for our next Empowered #patientchat discussion as we explore patient involvement in research and development. We hope to see you Friday, April 6th on… Read More Empowered #patientchat – Are We Missing the Mark with Patient Involvement?

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UPCOMING WEBINAR WITH EDS WELLNESS & Dr. Lawrence Afrin #MCAD #Hypermobility & #ChronicPain

UPCOMING WEBINAR WITH EDS WELLNESS: (MCAD) MAST CELL ACTIVATION DISEASE: CURRENT CONCEPTS WITH PARTICULAR NOTES ON HYPERMOBILITY AND CHRONIC PAIN’ Posted by:  Strength/Flexibility/Health/EDS  | K N Myles | Apr 3, 2018 | Opening paragraph: ‘EDS Wellness is thrilled to have Dr. Lawrence Afrin join the speaker line up for their 2018 Video Webinar Series &… Read More UPCOMING WEBINAR WITH EDS WELLNESS & Dr. Lawrence Afrin #MCAD #Hypermobility & #ChronicPain

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Live Better with Rheumatoid Arthritis  |  Arthritis Foundation 

Useful ‘Toolkit!  Live Better with Rheumatoid Arthritis  |  Arthritis Foundation  |  19th March 2018 ‘This powerful resource will help you better understand your disease and take a positive step toward living a life of Yes. Get information, tips and tools that will help you work with your doctor to develop the best treatment plan for your… Read More Live Better with Rheumatoid Arthritis  |  Arthritis Foundation 

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The RARE Revolution – Youth Takeover is here!!!! –  #RareYouthProject

Exciting new magazine for youths with #rareillness |   The RARE Revolution – Youth Takeover is here!!!! –  #RareYouthProject|  18 March 2018 ‘This magazine has been created and brought to you by the #RareYouthProject. Following a year long programme of work experience and mentoring, our team made up of children and young people aged 8-23 have created… Read More The RARE Revolution – Youth Takeover is here!!!! –  #RareYouthProject

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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

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We’re all-a-flutter | Paul Simms Chairman of eyeforpharma  |  21 March 2018

Excerpt:

‘The people who shook our hands and took time out to speak to us made us feel heard; we cannot fault that. Just in shock that such esteemed pharma folks would be interested, and eyeforpharma has taught us that pharma is actually listening. So we can go and spread the word of that now with confidence after experiencing it for ourselves first hand.… Read More We’re all-a-flutter | Paul Simms Chairman of eyeforpharma  |  21 March 2018

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The Celiac Scene Newsletter | 01 March 2018

New!  The Celiac Scene Newsletter | 01 March 2018 The Celiac Scene Newsletter Why not visit the website and sign up for their newletters and check out their guides > Home Page theceliacscene.com/  About The Celiac Scene  >>> theceliacscene.com – about ‘Ellen Bayens’ is the Founder and President of The Celiac Scene™, the go-to gluten-free… Read More The Celiac Scene Newsletter | 01 March 2018

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#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

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Pharma / Science / Tech / AI – News

Latest!  BioPharma Dive |  Marketing Newsletter | 7 March 2018 biopharmadive.com | Marketing Newsletter   Latest!  BioPharma Dive |  Newsletter | 8 March 2018 #pharma  #pharmanews #clinicaltrials #patientcentricity #R&D #science biopharmadive.com BioPharma Dive |  WEEKENDER Newsletter |3 March 2018 BioPharma | WEEKENDER newsletter   About BioPharma Dive:  www.biopharmadive.com/about/ pharmaphorum Top Stories  |  3 March 2018 Headlines: Dangerous inflammation prompts worldwide withdrawal of MS drug… Read More Pharma / Science / Tech / AI – News

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

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Hydrotherapy – Heaven or hell? Part Two – session one / week one

Hydrotherapy – heaven or hell?  is a discussion that I have often read in other blogger’s pages, online support groups and also physically discussed with other people just like me who live life with chronic pain, hypermobility and chronic illness, within my own support group FibroFlutters.  For me it is something that I am still… Read More Hydrotherapy – Heaven or hell? Part Two – session one / week one

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