Category: Awareness campaigns, events, blogs, petitions & posters

#chronicillnessVOICE daily selection of health, medical, pharma and research news

#chronicillnessVOICE daily – health, patients, medical, research, #pharma related news for everyone #notjustpatients #chronicillnessVOICE daily: Bringing a varied selection of health news, medical news, pharma news, research news to you in relation to many aspects within the healthcare, medical healthcare & pharmaceutical landscapes. #chronicillnessVOICE #notjustpatients #chronicillness #patients #health #research #pharma #science #AI #digitalhealth #globalhealth #clinicalresearch… Read More #chronicillnessVOICE daily selection of health, medical, pharma and research news

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Ehlers Danlos Syndrome resources. Where to find information and support.

Raising awareness of Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders… Read More Ehlers Danlos Syndrome resources. Where to find information and support.

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International Dance Celebration Join us and ‘Shake It So’

Some of you may be thinking ‘dance, I can’t do that because of my disabilities’. Well, I’ll be dancing from my sofa! For example, chair dancing, wheelchair dancing and any kind of dancing you can manage is fine.… Read More International Dance Celebration Join us and ‘Shake It So’

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Top 10 Self-Help Tips for Back Pain and Fibromyalgia Sufferers | Nichola Adams, Health Ergonomist

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

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Call for action: As patients and HCP’s please give your input on patient information leaflets (PIL) and medicine guides

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

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Are you aware of this #Rare? Today is International Ataxia Awareness Day.

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.

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Are you aware of this #Rare? | Wolfram Syndrome UK Virtual Conference 2020 | 19th and 26th September

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

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Almost there! Will you join us to talk about ‘Reaching patients and educating patients using agile social media strategies’​?

#RegisterNow & join me at the
@RE_Pharma
#Pharma #Patient #Europe 2020
PATIENS CAN ATTEND FOR FREE
#Digital Conference & Expo
15-16 September
#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’​?

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Pigmented Villonodular Synovitis (PVNS) our Co-Founder’s patient experience with ultra rare disease. #dazzle4rare2020

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

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It is time to ‘dazzle’, ‘strut your stripes’ and share ‘rare voices’ for #dazzle4rare2020! 9 – 14th August

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

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