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.
Category: Patient Advocacy
CLINICAL TRIALS NEXUS EUROPE – Digital Event November 26-27th
The Coronavirus Pandemic has got us all considering how to navigate clinical trials and what are the best approaches for patient recruitment and retention. It is my belief that implementing patient engagement from the onset of the trial during trial design could be the beneficial answer. … Read More CLINICAL TRIALS NEXUS EUROPE – Digital Event November 26-27th
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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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There’s still time to REGISTER for this conference on RARE DISEASE AND ORPHAN DRUGS 1 – 2 October
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
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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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Reflecting back on 2020, come look at my advocacy! Then will you please, please, endorse me. #WEGOHealthAwards
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
