rare disease

14th May 2021

Mystery Disease Monday is back #MDM

Jo McPherson daretothinkrare, Mystery Disease Monday, raredisease daretothinkrare, MDM, medical education, Mystery Disease Monday, patient advocacy, raising awarness, rare disease

You spoke and we listened!! We are pleased to announce that Mystery Disease Monday will be back from Monday 17th May and to mark the start of National Eosinophilic Awareness […]

7th May 2021

Precision Medicine & Rare Disease

Jo McPherson clinical trials, online, rare disease 0

If you work in rare diseases or rare disorders, this conference is one you cannot miss. Come and hear talks and discussions by leaders in academia, biotech, pharmaceuticals, diagnostics, clinical […]

6th May 2021

Making the Unseen Seen: Rare disease and the lessons learned from the COVID-19 pandemic

Jo McPherson COVID19, disease, raredisease, Research ARDEnt, COVID-19, rare disease, Report

At the beginning of the COVID-19 pandemic of early 2020, a group of concerned advocates came together to take Action for Rare Disease Empowerment. The group became known as ARDEnt […]

5th May 2021

Mobilising pathways to accommodate new transformative treatments – using CF as a case study

Jo McPherson cystic fibrosis, pathways, Patients, rare disease 0

Join OPEN HEALTH for a live webinar exploring the journey of RARE pathway transformation and the introduction of disease-modifying treatments as part of their Rare Thoughts and Outcomes series. Learn […]

18th August 2020

The Unusual Suspects 2020 – Rare diseases in everyday medicine

Lucy McKay conference, daretothinkrare, M4RD Events, Video clinicians, diagnosis, doctor, doctors in training, event, medical student, rare disease, rsm, symposium, the unusual suspects

In February 2020, a month before lockdown in the UK, we held our annual symposium at The Royal Society of Medicine for the sixth year. ‘The Unusual Suspects: Rare diseases […]

18th June 2020

New Online Tool for Assessing COVID-19 Risk in People With Rare Genetics Diseases

Jo McPherson COVID19, daretothinkrare, disease, doctor, Family support, patient, Research, Uncategorised COVID19, online tool, rare disease

UCL Great Ormond Street Institute of Child Health has responded to the considerable anxiety and confusion among many people living with rare diseases about their level of risk from COVID-19 and the […]

16th April 2020

Fizzy’s SwimRun for Rosie

Lucy McKay fundraising, raredisease, Uncategorised australia, Fizzy, fundraising, Lucy mckay, rare disease, Rosie, Swimrun, Thyroid cancer

The Challenge For months Fizzy Keeble and her partner, Mike, have been training in preparation for this Saturday. The challenge? SwimRun Australia – a unique and challenging adventure sport where […]

29th February 2020

Rare Disease Day 2020

Jo McPherson raredisease, Uncategorised awareness, diagnosis, doctor, doctors in training, foundation doctors, medical education, medical school, medical student, rare disease, rare disease day

On this rare day take time to listen to a patient story and decide what you will do to make a difference to 300 million people living worldwide with a […]

22nd January 2020

The 10th European Conference on Rare Diseases & Orphan Products (ECRD)

Jo McPherson clinicians, patient advocacy, policy makers, rare disease, research, stakeholders 0

People living with a rare disease have the right to reach their highest potential of well-being; join us online for ECRD 2020 to take part in discussions to inform and build the future ecosystem for rare disease policies and services.

2nd October 2019

Rett UK Regional Professionals Day

Jo McPherson GP, OT, professionals, rare disease, Rett syndrome, SLT 0

Great opportunity to learn more about Rett syndrome and how to support people with the disorder