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
Starting on September 28 and 29, AIMed will go live with a weekly series of high quality content. Shorter, more focused sessions available to view for free live or on-demand.… Read More Clinician Series is back with a Fresh new format – AIMed
Do you have Irritable Bowel Syndrome (IBS)? Irritable Bowel Syndrome can be quite debilitating and many members of FibroFlutters have been diagnosed with it. To help people understand the condition better, and raise awareness, I share this video and information leaflet. The intense pain leaves me pacing and then writhing, and pacing and writhing…. …… Read More Irritable bowel syndrome (IBS) what is it? – video | Patient | Dr Sarah Jarvis
Precision Medicine Forum – Patient Week convenes healthcare professionals, researchers, industry, payers and patients/patient advocates in a unique setting which puts the patient front and centre of the discussions. This time around there will be panels sessions, roundtables, 1-2-1 networking and group networking sessions.… Read More Precision Medicine Forum PATIENT WEEK – Change of date.
Get paid to Voice your opinions. Help companies develop better products and services to help provide better healthcare for patients. Create better patient outcomes!… Read More Voice your opinions to improve medical products and services
RAREsummit is more than an event – it’s where the magic happens. A powerful movement for change that provides the right ingredients and ecosystem for a better future, where productive collaborations are nurtured and flourish for real patient impact.… Read More RARE Summit 21 – it’s more than an event – it’s where the magic happens!
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’
Great opportunity to get together with other guys that have rare diseases and mental health issues.
Meet in a safe space, talk about what you are going through and offer support to each other if and where needed.… Read More Rare Disease Male Support Group – mental health community support.