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.
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.
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.
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…. … […]
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.
Get paid to Voice your opinions. Help companies develop better products and services to help provide better healthcare for patients. Create better patient outcomes!
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.
Unfortunately, there is no one-size fits all solution to the management of fibromyalgia.
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.
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.