Category: Rare

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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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

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My favourite Health Medical Research Patient & Pharma related Paper.Li newsletters for everyone #notjustpatients | Self-Updating

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

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