Rare neurological disease – Awareness campaign for AtaxiaUK #IAAD21

Taryn is delivering the Ataxia UKs medical guidelines to her GP in Sunderland for the campaign. Educating doctors is important to help this rare condition, ataxia, get recognised. Knowing about the disease can help people with symptoms to get noticed sooner… and diagnosed quicker.… Read More Rare neurological disease – Awareness campaign for AtaxiaUK #IAAD21

Patient Engagement With Patient Focused Medicine Development

The PFMD network is making sure to aggregate existing knowledge and tools, identifying good practices and coherently combining them before designing accessible and useful avenues for the various audiences that will use them.… Read More Patient Engagement With Patient Focused Medicine Development

International Ataxia Awareness Day 25th September with ‘Ataxia and Me’

The word ‘ataxia’ comes from the Greek ‘a taxis’, which means ‘without order’.
          Our mission is to bring back some of the order to the lack of order
It is the term used for a group of neurodegenerative diseases that affect balance and coordination.… Read More International Ataxia Awareness Day 25th September with ‘Ataxia and Me’

Dazzle4Rare 2021 – #StrutYourStripes with us at ZebraStrutters to raise awareness!

A simple goal of signal boosting rare and undiagnosed patient and community messages. August week long event, joining allies, advocates, small and large non-profit organisations, and others who wish to elevate rare and undiagnosed voices.… Read More Dazzle4Rare 2021 – #StrutYourStripes with us at ZebraStrutters to raise awareness!

ARDEnt Report – Rare Disease and the impact of the COVID19 pandemic.

“CRDN collaborated with Medics 4 Rare Diseases and Rare Revolution Magazine to bring together a cross sector group of experts and advocates newly named ARDEnt (Action for Rare Disease Empowerment) to produce a report called “Future Proofing Rare Disease Care, Research, and Treatment.” … Read More ARDEnt Report – Rare Disease and the impact of the COVID19 pandemic.

International Awareness Day May 12th

International Awareness Day – May 12th International Awareness Day – May 12th is held every year to raise awareness of Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS), Fibromyalgia, Multiple Chemical Sensitivity, Gulf War Syndrome and other Chronic Immunological and Neurological Diseases It is important to continue to help people understand what these conditions are, how they affect patients… and… Read More International Awareness Day May 12th

#chronicillnessVOICE May 11 health, medical, pharma and research news

#chronicillnessVOICE May 11 – health, patients, medical, research, pharma related news for everyone #notjustpatients #chronicillnessVOICE May 11: 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… Read More #chronicillnessVOICE May 11 health, medical, pharma and research news

#chronicillnessVOICE May 7 health, medical, pharma and research news

#chronicillnessVOICE May 7 – health, patients, medical, research, pharma related news for everyone #notjustpatients #chronicillnessVOICE May 7: 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… Read More #chronicillnessVOICE May 7 health, medical, pharma and research news