Categories
Ataxia Awareness campaigns Awareness campaigns, events, blogs, petitions & posters Charities chronic illness Medical Conditions / Disorders Medical news stories, blogs and research Neuroscience Patient Advocacy Rare

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.

Categories
Awareness campaigns clinical trials Drug development Educational patient centricity Patient Engagement pharma Research Sites to visit

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.

Categories
#Innovation AI in medicine Clinician Series clinician series clinicians Educational EVENTS Health and medical medical Medical news stories, blogs and research Pharma / Science / Tech / Digital / AI Professionals Webinar

Clinician Series is back with a Fresh new format – AIMed

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.

Categories
chronic illness chronic pain Fibro MeCFS online NEWS & INFO sources Info site invisible illness Irritable Bowel Syndrome (IBS) Medical news stories Simply Symptoms Sites to visit

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…. … […]

Categories
Academics Awareness campaigns, events, blogs, petitions & posters Biomedical scientists Biotechnology Cell & Microbiology Child health clinicians conference Diagnosticians Drug development EVENTS Geneticists Health and medical Health Care Providers Healthcare Lab Technicians Media Partners medical Medical news stories, blogs and research Medical specialists / consultants Medical technologists Mens health Patient Advocacy patient centricity Patient Engagement Patients Pharma Pharma / Science / Tech / Digital / AI Precision Medicine Professionals Researchers

Precision Medicine Forum PATIENT WEEK – Change of date.

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.

Categories
Care givers Child health chronic illness Drug development FibroFlutters Health and medical Healthcare Join the Community medical Medical Conditions / Disorders Medical news stories, blogs and research Partnerships Patient Advocacy Patient Engagement Patients Product Reviews Rare Rare Disease Advocacy Research Survey Therapies and Treatments Twitter Feed

Voice your opinions to improve medical products and services

Get paid to Voice your opinions. Help companies develop better products and services to help provide better healthcare for patients. Create better patient outcomes!

Categories
#Innovation Awareness campaigns, events, blogs, petitions & posters Care givers Drug development EVENTS Health and medical Healthcare Industry & business matters Media Partners medical Medical Conditions / Disorders Medical news stories, blogs and research Patient Advocacy patient centricity Patient Engagement Patients pharma Professionals Rare Rare Disease Advocacy rare genetic disorder Researchers Scientists Supporters / Ambassadors Twitter Feed

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.

Categories
Awareness campaigns Awareness campaigns, events, blogs, petitions & posters chronic illness chronic pain FibroFlutters Fibromyalgia FMAUK Info site Join the Community Medical Conditions / Disorders Medical news stories, blogs and research Twitter Feed

Fibromyalgia Awareness Week 2021 – #BecomeFibroAware

Unfortunately, there is no one-size fits all solution to the management of fibromyalgia.

Categories
Ataxia Awareness campaigns Awareness campaigns, events, blogs, petitions & posters Charities chronic illness Health and medical Healthcare Medical Conditions / Disorders Medical news stories, blogs and research Neurology Patient Advocacy Patients Rare Rare Disease Advocacy rare genetic disorder Supporters / Ambassadors Twitter Feed

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.

Categories
Awareness campaigns, events, blogs, petitions & posters Care givers chronic illness Join the Community Medical Conditions / Disorders Medical news stories, blogs and research Mens health mental health Patient Advocacy Patients Rare Rare Disease Advocacy

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.