To mark national Back Care Awareness Week (October 5-9), Nichola, a Technical Member of The Chartered Institute of Ergonomics and Human Factors, has compiled her ‘Top 10 Self-Help Tips for Back Pain and Fibromyalgia Sufferers’.… Read More Top 10 Self-Help Tips for Back Pain and Fibromyalgia Sufferers | Nichola Adams, Health Ergonomist
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
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
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