It doesn’t matter where you live in the World when you are given your fibromyalgia diagnosis, one of the first things you want to know is where to get information that you can rely on.… Read More International Fibromyalgia Awareness Day – Happy 8th Birthday to FibroFlutters
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
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
Unfortunately, there is no one-size fits all solution to the management of fibromyalgia.… Read More Fibromyalgia Awareness Week 2021 – #BecomeFibroAware
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’
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!
“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.
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.… Read More #chronicillnessVOICE May 15 health, medical, pharma and research news
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, 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
