Patient Engagement Day with Prime Patient – Did you miss it?

Patient Engagement Day with Prime Patient – Did you miss it?
UPDATED to include an article by Olivia Kersey, Patient Strategist, at PEP Talks, which outlines the highlights of the very first annual Patient Engagement Day.… Read More Patient Engagement Day with Prime Patient – Did you miss it?

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

Irritable bowel syndrome (IBS) what is it? – video | Patient | Dr Sarah Jarvis

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

RARE Summit 21 – it’s more than an event – it’s where the magic happens!

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!

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’

Rare Disease Male Support Group – mental health community support.

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.

Do you have constant pain? This article may interest you!

Constant pain means you need a program or protocol to treat your basic injury or disease. One that reduces electric impulses and helps rebuild the damage to the NTRS in your spinal cord and brain. Symptomatic pain relievers are usually a must, but they don’t treat or reverse your basic problem. … Read More Do you have constant pain? This article may interest you!