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’

We’re off mobilising for charity – 1 month long Superhero Series challenge

Using my rollator with its seat for those appropriately paced stops we hope to get out of the back lane this time. Last year the pandemic put restrictions on how I could complete the challenge.… Read More We’re off mobilising for charity – 1 month long Superhero Series challenge

PROUD PARTNERS – Precision Medicine Forum PATIENT WEEK

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 PROUD PARTNERS – Precision Medicine Forum PATIENT WEEK

Dazzle4Rare 2021 – #StrutYourStripes with us at ZebraStrutters to raise awareness!

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!

#chronicillnessVOICE May 11 health, medical, pharma and research news

#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

There’s still time to REGISTER for this conference on RARE DISEASE AND ORPHAN DRUGS 1 – 2 October

The goal of this Conference is uniting all well-known clinical researchers, biotech professionals, Medical Advisories, Academicians and decision makers to discuss possible ways to accelerate orphan drug development and access to rare disease patients, including the introduction of recent technologies and products to help aid the access of orphan drugs… Read More There’s still time to REGISTER for this conference on RARE DISEASE AND ORPHAN DRUGS 1 – 2 October