Lara Bloom has Ehlers-Danlos Syndrome, a genetic connective tissue condition and this is her interview on ‘The Moment’ with Maxine Mawhinney.

International Executive Director Lara Bloom was interviewed recently by “The Moment-with Maxine Mawhinney” raising awareness about EDS/HDS and talking about her moment when she walked the London Marathon in 2011.… Read More Lara Bloom has Ehlers-Danlos Syndrome, a genetic connective tissue condition and this is her interview on ‘The Moment’ with Maxine Mawhinney.

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#chronicillnessVOICE | 21 September 2018 ~ a health newsletter for everyone! #chronicillness #notjustpatients #PAM2018 #EDS

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

The Chronic pain Daily |  Support from Coach Amber Rose 

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 … Read More #chronicillnessVOICE | 21 September 2018 ~ a health newsletter for everyone! #chronicillness #notjustpatients #PAM2018 #EDS

#chronicillnessVOICE | 20 September 2018 ~ a health newsletter for everyone! #chronicillness #notjustpatients #PAM2018 #EDS

Creating 3-D printed ‘motion sculptures’ from 2-D videos | 19 September 2018

Body support device helps people learn to walk again after a stroke, trauma | Purdue University  |  19 September 2018

TINY cancer detection device proves effective in Uganda testing  |  Cornell University  | 17 September 2018

I can’t sleep. What drugs can I (safely) take? |  by Ric Day And Andrew Mclachlan, The Conversation  | 19 September 2018

Customer Journeys Start With Smartphones, But Brands Still Don’t Get Mobile | Brian Solis   | 13 August 2018

Only 4 weeks to go and we’ll be packing our little cases and boarding the train to London, will you be there?
#pharmanews #eyeforpharma #pharma #tech
Patient Summit Europe
16-17 October 2018, London UK

paper.li newsletters have also My favourite health related paper.lis and they update themselves.   … Read More #chronicillnessVOICE | 20 September 2018 ~ a health newsletter for everyone! #chronicillness #notjustpatients #PAM2018 #EDS

CONNECT: Pain Awareness Month, Zebra Strong Tour, and more!  |  The Ehlers-Danlos Society  |  11 September 2018

September is Pain Awareness Month

90% of EDS patients live with some form of pain, but all experience this pain in a different way. Follow us on social media throughout the month for information, discussion, and support on the many aspects of EDS and HSD pain. #myEDSHurts #myHSDHurts
THE EHLERS-DANLOS SOCIETY EDS & RELATED DISORDERS GLOBAL REGISTRY… Read More CONNECT: Pain Awareness Month, Zebra Strong Tour, and more!  |  The Ehlers-Danlos Society  |  11 September 2018

Only 4 weeks to go and we’ll be packing our little cases and boarding the train to London, will you be there? The eyeforpharma Patient Summit

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.

Come and see me take part:  17th October | 17:00 – 17:40 (Day 2) 

Panel: Candid patient perspectives on the good, the bad and the ugly of service design… Read More Only 4 weeks to go and we’ll be packing our little cases and boarding the train to London, will you be there? The eyeforpharma Patient Summit

Ellen Bayens | The Celiac Scene News | Issue: September 2018

The Celiac Scene

NCGS Patients Not Able to Identify When Glutened

Victoria & Westshore: Meet Up Group for Gluten-Free Families

Celiac Disease – Is There a Surge in Diagnosis Rates?

What Not to Say to a Celiac

Antibody Therapy Could Stop Celiacs’ Immunological Trigger in its Tracks

Introducing Gfreewiki.com

Osteoporosis Diagnosis Does Not Warrant Celiac Disease Screening

5 Detection Strategies for Celiac Disease… Read More Ellen Bayens | The Celiac Scene News | Issue: September 2018

Patient Newsletter  |  Subject:  Do you have the end-of-summer blues? |  30 August 2018

Health tips for the last days of summer  >>>
How to get vitamin-ready for autumn and winter
Avoiding back-to-school head lice
Can you catch a cold when it’s still summer?
How to perfect your bedtime routine
Does your child have dyslexia?… Read More Patient Newsletter  |  Subject:  Do you have the end-of-summer blues? |  30 August 2018

September is #PAM2018 #painawarenessmonth chronic pain awareness month | Airing Pain -Programme 106 | 5 September 2018

Programme 106: Pain Education for Doctors, Chronic Pain and Resilience
What can be done to implement better pain educaiton for doctors, patients and parents, and trusting your pharmacist when in doubt.… Read More September is #PAM2018 #painawarenessmonth chronic pain awareness month | Airing Pain -Programme 106 | 5 September 2018

Healthcare Dive: Top Payer News | Weekly edition | Sept.​ 12,​ 2018

In big payer win, court sides with UnitedHealth on MA overpayment rule

Michigan threatens to repeal Medicaid expansion if work requirements not approved

California law brings more scrutiny of payer mergers

Managed care companies, providers would benefit from Medicaid expansion

Modest ACA plan premium changes expected for 2019

Montana co-op wins $5.3M CSR lawsuit

and much more…… Read More Healthcare Dive: Top Payer News | Weekly edition | Sept.​ 12,​ 2018

#chronicillnessVOICE | 12 September 2018 ~ a health newsletter for everyone! #chronicillness #notjustpatients

Today’s newly added readables have all been selected from  >>> 
Science X Newsletter | Tuesday 11 Sep 2018

SAFETY WARNING!  As hurricane florence targets US, experts urge safety
September 11, 2018

Poll: Teens say social media makes them feel better
September 11, 2018 by Barbara Ortutay

Linear equations system will restore impaired hand motion
September 11, 2018 by Moscow Institute Of Physics And Technology, Moscow Institute of Physics and Technology

Four honored for genetic research and developing anesthetic
September 11, 2018 by Malcolm Ritter

Decoding robotic surgery skills
September 11, 2018, University of Southern California

Teachers to trial new MindAid app created to support pupils
September 11, 2018, Royal Holloway, University of London

and more…

Preview of the 27th European Academy of Dermatology and Venereology (EADV) Congress – European Medical Group  |  29 AUGUST 2018 | DERMATOLOGY

How Blue Light can Affect People with Chronic Illness |  By Heidi (Guest Writer)  |  9 September 2018

#PAM2018
MNT weekly newsletter | 5 September 2018
Pain / Anesthetics

>Airing Pain
Informing the pain community
Programme 106:
Pain Education for Doctors, Chronic Pain and Resilience

paper.li newsletters have also My favourite health related paper.lis and they update themselves.   … Read More #chronicillnessVOICE | 12 September 2018 ~ a health newsletter for everyone! #chronicillness #notjustpatients

Latest edition!  ARMA Newletter | Arthritis & Musculoskeletal Alliance  | September 2018

MSK services survey – Please let us know what is happening locally
As part of our 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 our support for improvements.… Read More Latest edition!  ARMA Newletter | Arthritis & Musculoskeletal Alliance  | September 2018

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

Featuring:

STAT: Morning Rounds | Opioids bill slated for vote / redesigning medical beeps / & flu drug results | 10 September 2018

September is #PAM2018 #painawarenessmonth

Neuroscience Newsletter | 10  September 2018
Neuroscience News

SOMNEX- THE FIRST DEDICATED SLEEP SHOW IN THE UK 12th-14th OCTOBER… |  BARMAC5 | BackPainBlog  | 10 September 2018

An e-mail  from a friend, The disabled Diva, Cynthia, raising awareness of
#chronicpain 11 September 2018

The Arthritis Foundation  |   Managing Health Care With Arthritis  |  10 September 2018

🔴 Savvy Cooperative is live now: #SavvyChat – How To Have Breadth and Purpose with guest Vanessa Mason |  YouTube  |  10 September 2018

“Increase Positive Energy Vibration” Deep Meditation Music, Clear Negative Energy, Healing Music 
By  Meditation and Healing |  8 September 2018

Latest edition! 
ARMA Newletter | Arthritis & Musculoskeletal Alliance  | September 2018

MNT weekly newsletter | 5 September 2018 | Pain / Anesthetics

@PainConcern | Pain Concern |Airing Pain PODCAST
Informing the pain community
106: Pain Education for Doctors, Patients, and Parents

Read More #chronicillnessVOICE | 11 September 2018 ~ a health newsletter for everyone! #chronicillness #notjustpatients

September is National Suicide Prevention Awareness Month |  Jenny Picciotto |  National Pain Report |  1 September 2018

Excerpt:

The best way to prevent a crisis from escalating is to plan ahead and decide how you will respond ahead of time. A safety plan, often composed with the help of a counselor, is a step by step process that begins with identifying certain situations, thoughts or feelings that you recognize as the warning signs of a potential crisis.… Read More September is National Suicide Prevention Awareness Month |  Jenny Picciotto |  National Pain Report |  1 September 2018

Patient Newsletter  |  Subject:  Have you signed up to save a life? |  5 September 2018

Healthy living tips from the experts:

What causes male pattern baldness – and is there a cure?

How to stop feeling bloated all the time

What it’s like to be a recovering sex addict

Why is there still stigma around antidepressants?

Do you get neck pain when you move your head?… Read More Patient Newsletter  |  Subject:  Have you signed up to save a life? |  5 September 2018

Digital Health Newsletter | Digital Health | 6 September 2018

Headlines  >>>

NEWS | Hancock to announce £200m for additional GDEs

NEWS |  Swindells strikes refreshingly optimistic tone at Expo

DIGITAL PATIENT |  England’s acute trusts beat deadline for e-Referrals switch

DIGITAL PATIENT |  Eye-controlled wearable aims to give locked-in patients a voice

SHARED RECORDS |  Cerner announces partnership with STP to connect information

Features  >>>

FEATURE |  Digital jam for NHS providers a welcome start

FEATURE | Digital natives will change the way we think about healthcare delivery

FEATURE |  Joe’s View: On the value of patient-centric records… Read More Digital Health Newsletter | Digital Health | 6 September 2018

#chronicillnessVOICE | 10 September 2018 ~ a health newsletter for everyone! #chronicillness #notjustpatients

September is #PAM2018 #painawarenessmonth chronic pain awareness month

Featuring:

Ellen Bayens | The Celiac Scene News | Issue: September 2018

THE AWFUL PAIN OF A TRAPPED/PINCHED #NERVE… |  BARMAC5 | BackPainBlog  | 9 September 2018

“Increase Positive Energy Vibration” Deep Meditation Music, Clear Negative Energy, Healing Music 
By  Meditation and Healing |  8 September 2018

My Medical Musings
Medically Retired and Living a Life of Faith and Hope with a Rare Disease
The “Chronic Illness” Law of Diminishing Returns  |  Sam  |  7 September 2018

The Best Free Apps to Combat Migraine & Chronic Pain  |  migrainemantras  | By Alexandria  |  7 September 2018

Latest edition! 
ARMA Newletter | Arthritis & Musculoskeletal Alliance  | September 2018

MNT weekly newsletter | 5 September 2018 | Pain / Anesthetics

@PainConcern | Pain Concern |Airing Pain PODCAST
Informing the pain community
106: Pain Education for Doctors, Patients, and Parents

Read More #chronicillnessVOICE | 10 September 2018 ~ a health newsletter for everyone! #chronicillness #notjustpatients

MSWorldNewsletter  |  Latest from MSWorld, News, Events & More!  | 3 September 2018

MS Awareness, Patients helping patients

“During MSWorld’s Anniversary Celebration when you donate as little as $22.00 we’ll send you one of these wonderful Klean Kanteen 27oz. Classic Pacific Blue bottles as a
Thank You for your generous donation!”  ~ MS WORLD… Read More MSWorldNewsletter  |  Latest from MSWorld, News, Events & More!  | 3 September 2018

MedicineNet ~ Newsletter | FEATURED Mosquito Repellents: What Works and What Doesn’t?  | 6 September 2018

MedicineNet ~ Newsletter  | FEATURED Mosquito Repellents: What Works and What Doesn’t?  |  6 September 2018

QUIZ
Is It Contagious? Take the Quiz!

SLIDESHOW
A Visual Guide to Knee Replacement

ARTICLE
Symptoms of Cystic Fibrosis

SLIDESHOW | Nail Salon FAQs

SLIDESHOW | Top Organic Foods

SLIDESHOW | Why Am I Bloated?… Read More MedicineNet ~ Newsletter | FEATURED Mosquito Repellents: What Works and What Doesn’t?  | 6 September 2018

NIHR Funding and Support Round-up |  NIHR  |  6 September 2018

Including  >>>

Latest funding opportunities

Have your say: trial registration and timely disclosure of results

New investigators can’t apply for research funding…can they? | By Justine Tomlinson

Hear Professor Jeremy Wyatt explain why the NIHR is seeking to fund more research into digital health, and what kind of proposals we would like to see.

What are studies within a trial (SWAT)?

From the RDS desk… Read More NIHR Funding and Support Round-up |  NIHR  |  6 September 2018

#chronicillnessVOICE | 7 September 2018 ~ a health newsletter for everyone! #chronicillness #notjustpatients

Digital Health Digest | 6 September 2018

September is #PAM2018 #painawarenessmonth chronic pain awareness month

Featuring:

MNT weekly newsletter | 5 September 2018 | Pain / Anesthetics

@PainConcern | Pain Concern |Airing Pain PODCAST
Informing the pain community
106: Pain Education for Doctors, Patients, and Parents

Chronic Pain From WebMD |  Featured:   Benefits and Risks of Chiropractic Care |  6 September 2018

The Ehlers-Danlos Society|  CONNECT: 2017 Criteria Survey, EDS + psychology webinar tomorrow, and more!  | 4 September 2018 >> Webinar: The Emotional Dimensions of EDS/HSD

10 Ways ‘Anxiety Pain’ Manifests  |  Sarah Schuster – Staff |  Mental Health on The Mighty |  26 July 2018

Read More #chronicillnessVOICE | 7 September 2018 ~ a health newsletter for everyone! #chronicillness #notjustpatients

Psych Central  |  Psych Central  Daily Newsletter  |  6 September 2018

Headlines for today 

3 Reasons Therapy Should Be Part of ADHD Treatment

They Aren’t Dangerous Characters: Life with Dissociative Identity Disorder

Supporting Patients in Their Eating Disorder Recovery: An Interview with Caryn Raba of Recovered Living

Perception of Support Helps People Cope with Worries… Read More Psych Central  |  Psych Central  Daily Newsletter  |  6 September 2018

#chronicillnessVOICE | 5 September 2018 ~ a health newsletter for everyone! #chronicillness #notjustpatients

Featuring:

RELIEF Newsletter |  (IASP) International Association for the Study of Pain  | August 30, 2018

September is #PAM2018 #painawarenessmonth chronic pain awareness month | Airing Pain PODCAST
Informing the pain community
106: Pain Education for Doctors, Patients, and Parents

Tincture Takeaways |  Tincture newsletter |  2 September 2018

Ellen Bayens | The Celiac Scene News | Issue: September 2018

Patient Newsletter  |  Subject:  Have you signed up to save a life? |  5 September 2018
Main Headline:  What it’s like to be on the organ transplant waiting list

@RonnyAllan1
RonnyAllan.NET – Community Newsletter Covering August 2018

@ehlersdanlosuk
The Ehlers-Danlos Support UK  Campaign Newsletter ~ Are you ready for Jeans for Genes Day? 

Read More #chronicillnessVOICE | 5 September 2018 ~ a health newsletter for everyone! #chronicillness #notjustpatients

For the #Professionals Psychiatry Advisor’s Daily Updates  | Featuring:  Antipsychotics Adversely Affect Adiposity and Insulin Sensitivity in Youths |  August 29 2018

  For the #Professionals Psychiatry Advisor’s Daily Updates  | Featuring:  Antipsychotics Adversely Affect Adiposity and Insulin Sensitivity in Youths |  August 29 2018 Psychiatry Advisor’s Daily Updates email features the latest News, Clinical Features, and Opinions for psychiatric health-care providers. Also Featuring >>> Deep Transcranial Magnetic Stimulation Combined With SSRIs Possibly Effective for Treatment-Resistant Depression Cortisol Levels May Contribute to Global Cognitive… Read More For the #Professionals Psychiatry Advisor’s Daily Updates  | Featuring:  Antipsychotics Adversely Affect Adiposity and Insulin Sensitivity in Youths |  August 29 2018

Event registration opens today for National Drug & Alcohol Facts Week  |  National Institutes of Health (NIH) |  29 August 2018

‘NDAFW is an annual, week-long series of educational events that link teens with scientific experts to SHATTER THE MYTHS about substance use and addiction. NIDA and NIAAA are both part of the National Institutes of Health.’… Read More Event registration opens today for National Drug & Alcohol Facts Week  |  National Institutes of Health (NIH) |  29 August 2018

The Big Trends Transforming Pharma | 28 August | eyeforpharma

Read the article here to hear from:

Sebastian Guth, Executive Vice President and Chief Marketing Officer, Bayer

Christi Shaw, Senior Vice President and President, Lilly Bio Medicines, Eli Lilly

Kris Sterkens, Company Groups Chairman, Europe, Middle East and Africa, Janssen

Julie Gerberding, EVP & Chief Patient Officer, MSD

Jim Robinson, President & COO, Alkermes

Andrin Oswald, Director of Life Sciences Partnerships, Global Health, Gates Foundation… Read More The Big Trends Transforming Pharma | 28 August | eyeforpharma

NIHR Life Sciences Industry Newsletter |  NIHR  |  30 August 2018

Record numbers take part in life sciences industry research

New recorded webinar: Our offer to the life sciences

Companies should bring their biosimilar studies to the UK. Here’s why…

NIHR partners with the British Heart Foundation in world-leading cardiovascular research

Transparent and consistent costing approach for commercial contract research

Improving CRN research activity data collection… Read More NIHR Life Sciences Industry Newsletter |  NIHR  |  30 August 2018

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

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

Rare Revolution Mag ~ Morven May MacCullum discusses her journey with Lyme Disease about finding new purpose

***Free DIGITAL Subscription***

A BRAND NEW digital magazine giving a voice to patients affected by RARE conditions and the charities that represent and support them.

Sign up via the website link above to subscribe for this free quarterly magazine and receive it straight into your inbox every quarter.… Read More Rare Revolution Mag ~ Morven May MacCullum discusses her journey with Lyme Disease about finding new purpose

Rare Disease stories via The Mighty

#Rare #RareDisease #chronicillness #invisibleillness 25 Secrets of People Who Can’t Work Because of Rare Disease 25 Secrets of People Who Can’t Work Because of Their Rare Disease — onThe Mighty We Are the Sisterhood of Mothers With Medically Fragile Children — on The Mighty What It’s Like to Be a ‘Medical Trailblazer’ — on The Mighty Exciting Rare News: First… Read More Rare Disease stories via The Mighty

Are you looking for a chance to change the future of personalized health, join ‘Patients Like Me’.

Patients Like Me’s digital health learning system uses the most advanced technologies to help you better understand wellness, aging, and disease. As new understanding emerges, you will gain access to tools, information and connections to people like you to find a clearer path forward to your own future health.   “PatientsLikeMe is the world’s largest… Read More Are you looking for a chance to change the future of personalized health, join ‘Patients Like Me’.

Why Patient Organizations Are No Summer Fling For Pharma By Adam Chapman |  8 August 2018

#pharmanews #eyeforpharma #pharma #tech Why Patient Organizations Are No Summer Fling For Pharma By Adam Chapman |  8 August 2018 Opening paragraph ‘Breaking news: Protestors from patient organizations gather en masse outside a pharmaceutical company’s headquarters wielding placards emblazoned with the words TRANSACTIONAL and TOKENISTIC.’ Excerpt ‘A patient expert’s contribution may not always be considered but letting… Read More Why Patient Organizations Are No Summer Fling For Pharma By Adam Chapman |  8 August 2018

#chronicillnessVOICE | 14 September 2018 ~ a health newsletter for everyone! #chronicillness #notjustpatients #PAM2018 #EDS

CONNECT: Pain Awareness Month, Zebra Strong Tour, and more!  |  The Ehlers-Danlos Society  |  11 September 2018

Rare Disease on The Mighty  |  Newsletter |  13 September 2018

Heart Matters  |  Learn all about the fats in your blood  |  13 September 2018

#MEAction Team  |  Daily Digest: Scottish Lib. Dems Pass Motion for ME, with Amendment  |  13 September 2018

GOV.UK | Press release  |  Jail time to double for assaulting an emergency worker | 13 September 2018

Preview of the 27th European Academy of Dermatology and Venereology (EADV) Congress – European Medical Group  |  29 AUGUST 2018 | DERMATOLOGY

Neuroscience Newsletter | 13  September 2018
Neuroscience News

Airing Pain
Informing the pain community
Programme 106:
Pain Education for Doctors, Chronic Pain and Resilience

paper.li newsletters have also My favourite health related paper.lis and they update themselves.   … Read More #chronicillnessVOICE | 14 September 2018 ~ a health newsletter for everyone! #chronicillness #notjustpatients #PAM2018 #EDS