your input will help us understand the needs, challenges and expectations regarding this important information, co-create tools to increase patient involvement in the development of patient information leaflets… Read More Call for action: As patients and HCP’s please give your input on patient information leaflets (PIL) and medicine guides
The goal of this Conference is uniting all well-known clinical researchers, biotech professionals, Medical Advisories, Academicians and decision makers to discuss possible ways to accelerate orphan drug development and access to rare disease patients, including the introduction of recent technologies and products to help aid the access of orphan drugs… Read More There’s still time to REGISTER for this conference on RARE DISEASE AND ORPHAN DRUGS 1 – 2 October
International Ataxia Awareness Day (IAAD) is on September 25 of each year. It is a coordinated effort from individuals and Ataxia organisations around the world to help shed light on this rare disease. #IAAD… Read More Are you aware of this #Rare? Today is International Ataxia Awareness Day.
Wolfram Syndrome is a rare genetic disorder which is also known as DIDMOAD syndrome after its four most common features: Diabetes Insipidus, Diabetes Mellitus, Optic Atrophy and Deafness… Read More Are you aware of this #Rare? | Wolfram Syndrome UK Virtual Conference 2020 | 19th and 26th September
#RegisterNow & join me at the
#Pharma #Patient #Europe 2020
PATIENS CAN ATTEND FOR FREE
#Digital Conference & Expo
#pharma #patient #patientengagement #patientcentricity #REpharmaPatient #socialmediastrategy #DrugDevelopment #communications #clinicaltrials… Read More Almost there! Will you join us to talk about ‘Reaching patients and educating patients using agile social media strategies’?
Categories listing – Pharma / Science / Tech / Digital / AI… Read More Pharma / Science / Tech / Digital / AI – Categories listing
After having constant dislocations in my knee where the PVNS tumour was removed from 6 years years previously had caused major damage. This was worsened with my hEDS which effects all of my joints. … Read More Pigmented Villonodular Synovitis (PVNS) our Co-Founder’s patient experience with ultra rare disease. #dazzle4rare2020
Many rare disease communities are very small which makes it hard to raise awareness by themselves, so through joining forces during this week their voices are strengthened in numbers and become one giant ‘united voice’ for rare disease awareness.… Read More It is time to ‘dazzle’, ‘strut your stripes’ and share ‘rare voices’ for #dazzle4rare2020! 9 – 14th August
Chronic Pain management can be a really difficult thing to master, please don’t give up as it can take time, perseverance and a lot of positive attitude until you find your balance with it.… Read More Where can you find Fibromyalgia and Chronic Pain resources across the Globe? Find out here!
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Okay, let’s get on with it! The following information is to help give you reasons for why you should endorse Carole for #WEGOHealthAwards… Read More Reflecting back on 2020, come look at my advocacy! Then will you please, please, endorse me. #WEGOHealthAwards
These newsletters update themselves so please remember to check in, and / or remember to opt-in for the newsletters via the links provided. … Read More My favourite Health, Medical, Research, Patient & Pharma related PaperLi newsletters for everyone #notjustpatients | Self-Updating
Yet the caregiver’s role in delivering patient care is often underappreciated – their insight overlooked.
It’s time this ended.… Read More The Caregiver and Patient Support Programme | FREE webinar | Reuters Pharma – formerly eyeforpharma
A flavoursome creamy chilli that is not too hot and which the whole family will love… Read More Sweet potato and spinach chilli recipe | Patient
Convenzis aims ‘to bring together senior teams in the public and private sectors to deliver change and transformation.… Read More Take a look at what NHS events Convenzis have coming up!
Bringing a varied selection of #healthnews #medicalnews #pharmanews #researchnews to you in relation to many aspects within the #healthcare #medicalhealthcare & #pharmaceutical landscapes. … Read More My favourite Health Medical Research Patient & Pharma related Paper.Li newsletters for everyone #notjustpatients | Self-Updating
It was easy to notice the fact my mobility wasn’t as stiff; pain was lesser than usual, and I wasn’t getting numbness with pins and needles as much in my hands and feet. … Read More Product Review: Cannacares CBD gel capsules, a food supplement to compliment your health management.
healtheo360 is a community where patients can connect with one another for support, inspiration, and motivation.… Read More healtheo360 Join a ‘PATIENT’ community and share your story!
Many thanks for supporting the work that the charity Fibromyalgia Action UK does towards raising awareness through educating people about what fibromyalgia is. Also, through the many support groups that the charity has throughout the UK that all support patients with fibromyalgia.… Read More May 12th International Fibromyalgia Awareness Day
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
Please note that medical information found on this website is designed to support, not to replace the relationship between patient and physician/doctor and the medical advice they may provide.… Read More Freshly updated Selected Newsletters from News Medical
Whether you are curious about essential oils, skeptical about essential oils, or frequently use essential oils, this is the perfect guide to help you get started and teach you about the basics.… Read More How to Get Started with Essential Oils – Pink Fortitude, LLC
This EXCLUSIVE PAPER ‘What Patients Want’ discusses the roundtables / interactive sessions that were designed + led by patients, co-chaired by patients, and moderated by industry facilitators ie patient advocates.… Read More ‘What Patients Want’ Executive Round table Summary – eyeforpharma Patient Summit October 2019
Not everyone with EDS has hypermobility, and not everyone with hypermobility has EDS!… Read More Today is #RareDiseaseDay – Read my Patient Experience: Living with multiple rare diseases | Pharmafile | What’s your #Rare? care to share?
Your Gluten-Free Guide to Victoria, Vancouver Island & the Gulf Islands!
Restaurant Reviews! Celiac News! What to See & Do in Gluten-Free Paradise!… Read More Ellen Bayens | The Celiac Scene e-News – February Edition!
The more I think about it, the fact that data sits in silos and is in different formats is the thing that is preventing true patient centricity, because it’s what stops you determining whether intervention X actually created result Y within the population, and hence reward the right kind of behaviour.’
PAUL SIMMS, CHAIRMAN EYEFORPHARMA… Read More NOT LONG NOW! eyeforpharma Barcelona 2020. Take a look at the agenda! BONUS Q&A re: patient centricity with Paul Simms
‘…The Dario LC Blood Glucose Management System features a lancing device, glucose meter, smartphone app, and Bluetooth connectivity to allow you to easily analyze readings, spot trends, and share results.’… Read More Guest content: Managing Diabetes: How Technology Can Help
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
It is time to pat yourselves on the back for being actively involved to help create change.… Read More Merry Christmas, happy holidays & all the best for 2020. Thank you for your support.
The discussions will look to give you a ‘step-by-step’ guide as to what you need to ‘successfully implement digital solutions, overcome challenges in scaling, early stage planning and cross-company consistency, to ensure your customer interactions are a success’. … Read More FREE WEBINAR | Make digital your success story | eyeforpharma by Reuters
Knowing the differences between conditions that share so many symptom similarities makes it easier to understand the condition that you have, and also means you can work with your health care providers to create the most suitable management plan for you to cope living with it.… Read More Bursitis and Osteoarthritis Similarities and Differences | News Medical | By Tim Boughton, M.Sc.
“Today, medicines work well in only a fraction of a target patient population. Not only is this a disservice to hundreds of thousands of patients, it is also a huge contributing factor to the poor performance and failure of many clinical trials.”… Read More The Digitome: a platform for enabling rapid decentralization, personalization and recruitment for clinical trials | eyeforpharma
FibroFlutters in support of, and the work by, AI Med
Recently, I had an appointment with a Gastroenterologist in the private sector as the NHS delayed my appointment by well over six months.… Read More Accessing specialist doctors faster after a brain injury
Read this post to find resources for fibromyalgia and to learn the different definitions from around the medical websites and dictionaries.… Read More Fibromyalgia? What’s that?Pronounced:- Fi – bro – my – al – jia – UPDATED POST
The attractive thing for me about this app is the fact that I can donate to charities just for taking my medications. … Read More This #healthapp is definitely worth trying if like me you’re dreadful at remembering to take your #medications
Family and friends are very often the primary caregivers for patients with cancer, despite not being paid or having any formal training, and can commonly experience sadness, anxiety, fatigue and sl… Source: Reflexology reduces anxiety and improves quality of sleep in informal carers — Federation of Holistic Therapists (FHT) – BACK PAIN BLOG UK…