Patient Advocacy Groups

19th May 2022

It’s not ‘just hypermobility’

Melissa Clasen daretothinkrare, disease, M4RD, Mystery Disease Monday, Patient Advocacy Groups, Podcast, raredisease Annabelle's Challenge, Ehlers Danlos, genetic, Hypermobility, M4RD, VEDS

Ehlers Danlos Syndrome (EDS) refers to a group of conditions that affects connective tissues, which includes skin, bones, blood vessels and many other organs. Symptoms of Ehlers Danlos Syndrome can […]

11th May 2022

Westminster, Rare Collaboration and Rare Diseases Action Plan 2022

Emma Huskinson daretothinkrare, doctor, M4RD, Patient Advocacy Groups, Report, UK Rare Disease Framework collaboration, LSD Collaborative, M4RD, MPS, Rare Diseases Action Plan, Westminster

Last Monday I attended a reception at the House of Commons to celebrate the 40th anniversary of the Society for Mucopolysaccharide Disease, or MPS. MPS is a member of the […]

5th November 2021

Syndromes without a name (SWAN)

Emma Huskinson daretothinkrare, disease, Mystery Disease Monday, Patient Advocacy Groups, raredisease dare to think rare, Diagnostic odyssey, SWAN UK, syndromes without a name, undiagnosed

It’s my first blog post for M4RD and I have been thinking back to when I was first introduced to the field of rare diseases, whilst in Med School. At […]

26th October 2021

Whose Voice Is It Anyway?

Jo McPherson M4RD, Patient Advocacy Groups, Report, UK Rare Disease Framework M4RD, NHS England & Improvement, NHSE&I, patient voice, RareQOL, UK Rare Disease Framework, WhoseVoice

On Thursday 27 May 2021 Sondra Butterworth, CEO of RareQoL and founder of the #WhoseVoice campaign, and Lucy McKay from M4RD hosted an engagement session on the UK Rare Diseases […]

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 […]