patient advocacy

28th February 2026

It’s Rare Disease Day!

Emma Huskinson Rare Disease Day Healthcare professionals, Learn your stripes, medical education, Medics for Rare Diseases, patient advocacy, rare conditions, Rare Disease Awareness, rare disease day, Rare Disease Day 2026, show your stripes 0

Happy Rare Disease Day everyone! We have been astounded by all of the engagement we have received for this year’s campaign already. Don’t forget to post your stripy sock photos […]

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20th February 2026

It’s officially the year of the horse… but remember to listen for zebra-hooves too!

Emma Huskinson Rare Disease Day Healthcare Education, Learn your stripes, medical students, Medical Training, Medics for Rare, Nursing education, patient advocacy, rare conditions, Rare Disease Awareness, rare disease day, Rare Disease Day 2026, show your stripes

Happy Lunar New Year! As we welcome the year of the horse, remember to show some support for their stripey counterparts. As you may know, there is an old rhetoric […]

15th January 2026

European Conference on Rare Diseases & Orphan Products (ECRD 2026)

Jo McPherson ECRD 2026, Europe, Eurordis, Healthcare Policy, Hybrid Event, Medical Research, Orphan Products, patient advocacy, Rare Disease Conference, rare diseases

🗓 Date: 2–4 June 2026 📍 Location: Prague & Online 🔗 Register: Sign up here Join EURORDIS‑Rare Diseases Europe for the largest patient‑led rare disease policy event in Europe! Over […]

19th November 2021

Maximising engagement with healthcare professionals

Jo McPherson engagement, HCPs, Healthcare professionals, medical professionals, NHS, NICE, PAGs, patient advocacy, rare disease 0

Join this webinar to explore the practical things patient groups can do to make sure they are engaging with HCPs in the most beneficial way. Most rare diseases are not […]

11th June 2021

Working together to share our message #DareToThinkRare

Jo McPherson daretothinkrare, patient, Patient Advocacy Groups, raredisease collaboration, daretothinkrare, patient advocacy, patient advocates, patient groups, Patients

We believe that asking doctors to #DareToThinkRare is fundamental to improving the experience of all patients living with rare diseases. And to eliminating the diagnostic odyssey. Working together to share […]

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 […]

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.